Tuesday, December 13, 2011
Sorry I Have Been Away
Monday, October 31, 2011
New post on Zeh Lezeh (For One Another)
From time to time, I am a guest blogger for the Ruderman Family Foundation. Here is my entry on today's blog.
Guest Blogger: Jo Ann Simons, CEO, Cardinal Cushing Centers
I’ve been asking myself this question each time I read about cloud computing in the pages of the business section and have no idea what it means. But I knew I needed to solve the mystery when I was asked to participate this fall in a conference at the Coleman Institute at the University of Colorado. With the title “Implications of Cloud Computing for Residential Support and Service for People with Disabilities,” the gathering will bring together service providers, consumers and advocates, technologists, law and policy specialists.
What have I learned? Enough to know that the cloud is going to be a game-changer – indeed a universe-changer -- for people with disabilities. If we think the IPad was revolutionary (and I do believe it was), we’ve seen nothing yet.
Imagine, the cloud will mean that each person with a disability will have a unique identifier (stored in the cloud) so that every time the person accesses their mobile phone, PDA, notebook, laptop, netbook, computer or any device with a screen (Metro card ticket machines, ATM machines, etc), the interface will look the same because the user will be identified and the font, size, colors and layout will look the way that works best for them.
A visually impaired person will see the size and color that best suits them and the volume will be set just for them. A person with a cognitive disability will see the same screen layout each time they access technology.
And the cloud is coming closer every day. There’s already an international initiative, the Global Public Inclusive Infrastructure (GPII) that’s planning to inform the public and work with government regulators, to shape cloud policy. For example, they’re already shaping how people with disabilities will access all forms of technology in a way that will make sense to each and every user.
All this is just the beginning. As budget pressures continue to mount and in-person supports may be cut back, we must all find less labor-intensive ways to provide services. The cloud will go a long way in helping people with disabilities become more independent as they stay connected to what’s an increasingly virtual support system.
-- Jo Ann Simons
Guest Blogger: Jo Ann Simons, CEO, Cardinal Cushing Centers
I’ve been asking myself this question each time I read about cloud computing in the pages of the business section and have no idea what it means. But I knew I needed to solve the mystery when I was asked to participate this fall in a conference at the Coleman Institute at the University of Colorado. With the title “Implications of Cloud Computing for Residential Support and Service for People with Disabilities,” the gathering will bring together service providers, consumers and advocates, technologists, law and policy specialists.
What have I learned? Enough to know that the cloud is going to be a game-changer – indeed a universe-changer -- for people with disabilities. If we think the IPad was revolutionary (and I do believe it was), we’ve seen nothing yet.
Imagine, the cloud will mean that each person with a disability will have a unique identifier (stored in the cloud) so that every time the person accesses their mobile phone, PDA, notebook, laptop, netbook, computer or any device with a screen (Metro card ticket machines, ATM machines, etc), the interface will look the same because the user will be identified and the font, size, colors and layout will look the way that works best for them.
A visually impaired person will see the size and color that best suits them and the volume will be set just for them. A person with a cognitive disability will see the same screen layout each time they access technology.
And the cloud is coming closer every day. There’s already an international initiative, the Global Public Inclusive Infrastructure (GPII) that’s planning to inform the public and work with government regulators, to shape cloud policy. For example, they’re already shaping how people with disabilities will access all forms of technology in a way that will make sense to each and every user.
All this is just the beginning. As budget pressures continue to mount and in-person supports may be cut back, we must all find less labor-intensive ways to provide services. The cloud will go a long way in helping people with disabilities become more independent as they stay connected to what’s an increasingly virtual support system.
-- Jo Ann Simons
Tuesday, October 25, 2011
Brian Skotko Remembers Allen Crocker
I miss him so much already. While October 23, 2011, marked the end of Dr. Allen Crocker’s profound life, it triggered the official beginning of his timeless legacy. He was a lover and a healer, a poet and a dreamer, a fighter and a defender. He was our buddy, whether we knew him personally or not.
When I arrived in Boston for medical school, I was determined to know him. I had heard him speak at national conferences before, but this was my chance to really meet the legend in our Down syndrome movement. After my parents had dropped me off—and before all of my bags were unpacked—I walked to his office at Children’s Hospital Boston, but what I didn’t realize was that Allen would quickly become my mentor, my colleague, and, most preciously, my friend.
He taught me you get when you give. No sooner had I begun medical school, Allen was driving me to Board meetings for the Massachusetts Down Syndrome Congress. Me, a Board member? Allen showed me that while my classes at Harvard Medical School were important, richer lessons were to be found in this non-profit, parent-driven organization. For the past ten years, I have learned more from the families of the MDSC than I will ever be able to repay. As I sat by his bedside during some of his final days, Allen still asked me how the “boys and girls of the MDSC” were doing. He never believed that doctors should be stuck in hospitals.
He taught me to be unsatisfied. Our friends with Down syndrome deserved to have their mysteries unlocked, so Allen would push me to find the answers. I would arrive at his office regularly at 7:30 a.m., prompt, to share my far-flung ideas about projects that I was considering. Allen told me that I was not crazy. In fact, I was not crazy enough. He prompted my research trip to Spain because he knew—before I did—that the journey would be formative. Allen remained my research mentor since that first project, and during my last visit to his bedside, I shared with him three papers that were six years in the making. He helped shape this project, and I told him that I would keep asking questions.
He reminded me to believe in myself. Life cannot be scripted. Allen knew that, and I think, preferred that. But, sometimes, I wish I could have avoided certain dramatic scenes in my own life. I remember that after sharing one tough day with Allen, he told me that I must meet him at a local Dunkin Donuts. Right there, on napkins, he sketched out for me his view of the situation. And, then, he looked me in the eye and told me that I was special. I needed that, no matter how much validation I might have found elsewhere. Allen taught me that our most graceful moments in life could be found during the most trying times.
He told me to seek unexpected cheer. Every so often, Allen would meet with me to review my career plans. I would write down some goals that I would hope to accomplish within the next year or so. Yet, after we got through those items quickly, he would ask me about more important life goals. He seemed more pleased when I told him that I was trying to learn Spanish, that I liked to make cold soups, and that my wife, Carrie, and I were taking dance lessons. And, he was right: my academic accomplishments will always pale in comparison to these private goals. Carrie and I still remember with great fondness when Allen, unannounced and unexpectedly, took to the podium at our wedding and reminded us all of the importance of “good cheer.”
And so, today, I have the remarkable privilege of working as a physician in the Down Syndrome Program at Children’s Hospital Boston, a program and a place where Allen shared his wisdom and his heart for decades. And, it is already here on a weekly basis that I see his legacy at work. They may not all know it, but children with Down syndrome have more opportunities today because of Allen. Parents have fewer battles to fight because Allen tore down walls. Grandparents play leading roles because Allen understood them to be central figures in family life. Brothers and sisters become advocates because Allen established precedents.
He would be the first to remind us that we all need to “carry on.” I will. We must. And, he will be right there with us.
.
When I arrived in Boston for medical school, I was determined to know him. I had heard him speak at national conferences before, but this was my chance to really meet the legend in our Down syndrome movement. After my parents had dropped me off—and before all of my bags were unpacked—I walked to his office at Children’s Hospital Boston, but what I didn’t realize was that Allen would quickly become my mentor, my colleague, and, most preciously, my friend.
He taught me you get when you give. No sooner had I begun medical school, Allen was driving me to Board meetings for the Massachusetts Down Syndrome Congress. Me, a Board member? Allen showed me that while my classes at Harvard Medical School were important, richer lessons were to be found in this non-profit, parent-driven organization. For the past ten years, I have learned more from the families of the MDSC than I will ever be able to repay. As I sat by his bedside during some of his final days, Allen still asked me how the “boys and girls of the MDSC” were doing. He never believed that doctors should be stuck in hospitals.
He taught me to be unsatisfied. Our friends with Down syndrome deserved to have their mysteries unlocked, so Allen would push me to find the answers. I would arrive at his office regularly at 7:30 a.m., prompt, to share my far-flung ideas about projects that I was considering. Allen told me that I was not crazy. In fact, I was not crazy enough. He prompted my research trip to Spain because he knew—before I did—that the journey would be formative. Allen remained my research mentor since that first project, and during my last visit to his bedside, I shared with him three papers that were six years in the making. He helped shape this project, and I told him that I would keep asking questions.
He reminded me to believe in myself. Life cannot be scripted. Allen knew that, and I think, preferred that. But, sometimes, I wish I could have avoided certain dramatic scenes in my own life. I remember that after sharing one tough day with Allen, he told me that I must meet him at a local Dunkin Donuts. Right there, on napkins, he sketched out for me his view of the situation. And, then, he looked me in the eye and told me that I was special. I needed that, no matter how much validation I might have found elsewhere. Allen taught me that our most graceful moments in life could be found during the most trying times.
He told me to seek unexpected cheer. Every so often, Allen would meet with me to review my career plans. I would write down some goals that I would hope to accomplish within the next year or so. Yet, after we got through those items quickly, he would ask me about more important life goals. He seemed more pleased when I told him that I was trying to learn Spanish, that I liked to make cold soups, and that my wife, Carrie, and I were taking dance lessons. And, he was right: my academic accomplishments will always pale in comparison to these private goals. Carrie and I still remember with great fondness when Allen, unannounced and unexpectedly, took to the podium at our wedding and reminded us all of the importance of “good cheer.”
And so, today, I have the remarkable privilege of working as a physician in the Down Syndrome Program at Children’s Hospital Boston, a program and a place where Allen shared his wisdom and his heart for decades. And, it is already here on a weekly basis that I see his legacy at work. They may not all know it, but children with Down syndrome have more opportunities today because of Allen. Parents have fewer battles to fight because Allen tore down walls. Grandparents play leading roles because Allen understood them to be central figures in family life. Brothers and sisters become advocates because Allen established precedents.
He would be the first to remind us that we all need to “carry on.” I will. We must. And, he will be right there with us.
.
Monday, October 3, 2011
Family Weekend
Our first ever Family Weekend was beyond expectation. The weather cooperated, the food was terrific as always ( who will forget the Italian block party on Friday night where we had dinner under the twinkling lights with music in the background), to the desert reception where the beta version of our new web site was revealed and the Transition workshop topped off our open houses, an assembly and demonstrations.
Saturday, the Shut up Sisters had us laughing until our stomachs hurt, the Harvest Festival delivered it's usual day of fun and food, our flag football and cheering teams had their qualifying event and the day was topped off by the student and alumni dance.
To end the weekend with a Confirmation Mass was a blessing to our community.
Many pictures were taken, here are the ones from my camera
Tuesday, September 20, 2011
Asperger’s: By Any Name Deserving Early and Effective Treatment
I am a guest blogger for Ruderman Family Foundation blog, "Zeh Lezah". This translates from the Hebrew to that we are all "responsible for one another". Here is my first entry as a gust blogger. To become a subscriber to this very intersting blog, follow this link:
http://zehlezeh.wordpress.com/
Guest blogger Jo Ann Simons, President/CEO Cardinal Cushing Centers, Hanover, MA
In less than two years, The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will be published by the American Psychiatric Association. This detailed book functions as a bible for countless physicians and other health care professionals, as well as government, insurance and legal agencies. Clinicians worldwide use it to diagnose and develop treatment plans and options for mental illnesses and disabilities. But this edition, the 5th, brings with it a huge change: eliminating Asperger’s syndrome and pervasive developmental disorder as separate diagnosis. Instead, both diagnoses will be considered an unnamed subset of Autism Spectrum Disorder.
Of course change is rarely greeted with complete enthusiasm and these plans are no exception. Some advocates feel the new definition of Autism Spectrum Disorder is too broad and many within the Asperger’s community prefer being separate from the general autism category. Still others believe it will lead to earlier identification of individuals with what is now called Asperger’s and this in turn will lead to earlier and more effective services. Professionals, too, are divided on the potential impact of this change, with proponents arguing it will give more freedom to physicians to make a diagnosis and greater latitude to decide the best course of treatment on a case-by-case basis.
Here at the Cardinal Cushing Centers, we welcome any change that leads to earlier identification and intervention which in turn leads to improved lives and outcomes for people with disabilities. Although it’s too early to assess the impact of this change and the debate is certain to continue over the next two years and well beyond, there is one other planned change in DSM-5 that we can all get behind: changing the diagnostic term “mental retardation” to “intellectual disability.” This will bring the DSM criteria into alignment with terminology used by other disciplines and organizations and serve as a potent reminder that this disability deserves the consideration and respect of every other one.
– Jo Ann Simons
http://zehlezeh.wordpress.com/
Guest blogger Jo Ann Simons, President/CEO Cardinal Cushing Centers, Hanover, MA
In less than two years, The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will be published by the American Psychiatric Association. This detailed book functions as a bible for countless physicians and other health care professionals, as well as government, insurance and legal agencies. Clinicians worldwide use it to diagnose and develop treatment plans and options for mental illnesses and disabilities. But this edition, the 5th, brings with it a huge change: eliminating Asperger’s syndrome and pervasive developmental disorder as separate diagnosis. Instead, both diagnoses will be considered an unnamed subset of Autism Spectrum Disorder.
Of course change is rarely greeted with complete enthusiasm and these plans are no exception. Some advocates feel the new definition of Autism Spectrum Disorder is too broad and many within the Asperger’s community prefer being separate from the general autism category. Still others believe it will lead to earlier identification of individuals with what is now called Asperger’s and this in turn will lead to earlier and more effective services. Professionals, too, are divided on the potential impact of this change, with proponents arguing it will give more freedom to physicians to make a diagnosis and greater latitude to decide the best course of treatment on a case-by-case basis.
Here at the Cardinal Cushing Centers, we welcome any change that leads to earlier identification and intervention which in turn leads to improved lives and outcomes for people with disabilities. Although it’s too early to assess the impact of this change and the debate is certain to continue over the next two years and well beyond, there is one other planned change in DSM-5 that we can all get behind: changing the diagnostic term “mental retardation” to “intellectual disability.” This will bring the DSM criteria into alignment with terminology used by other disciplines and organizations and serve as a potent reminder that this disability deserves the consideration and respect of every other one.
– Jo Ann Simons
Thursday, September 15, 2011
Wednesday, September 14, 2011
Noah Picked the Winning Number
So, you all see that it was a fair drawing, here is a picture of Noah and Donna a member of the teaching staff. Here is what Noah wrote:
Today I got chosen to choose a number from a bucket for the President of our school I felt honored being chosen for this especially since I am a new student. It made me feel welcome here. I number I chose was...32!
Tuesday, September 13, 2011
You Did It!!!
I promised that I would give away an Ipod shuffle when I reached 50 followers on my blog and we are at 50.I will assign each of you a number between 1 and 50. Tomorrow, I will put numbers 1-50 in a bag-shake it up and have a student pull one out. I will notify the winner and I hope to continue to bring you interesting blog entries and another prize drawing....
In the meantime, I want to share with you some photos from our tribute to Hanover's first responders, which we had yesterday to mark the 10th anniversary of 9/11. Hanover's Police, Fire and EMT's support us each and every day. They are here for us and I was so proud of our student's yesterday who showed their thanks. They read poems, presented them with art work and we all joined together in singing, "Proud to be An American."
A tree was dedicated as well.
A tree was dedicated as well.
Wednesday, August 31, 2011
The Health of People with Disabilities
I have long been aware of the health disparities that exist for people with disabilities ever since the 2001 literature reviews done by Yale University for Special Olympics. A new report from the Institute on Disability at the University of New Hampshire, examines the health status of working-age (18-64) people with disabilities, as reported to the Behavioral Risk Factor Surveillance System, the nation’s premier public health survey. According to their website:
Among the key findings in the report:
• If people with disabilities were a formally recognized minority group, at 19% of the population, they would be the largest minority group in the United States.
• The highest proportion of people who say their health is fair or poor is found in people with disabilities (40 percent, compared to 23 percent of Hispanics, 22 percent of American Indian/Alaska Natives, 18 percent of blacks, and 8 percent of Asians).
• People with disabilities have the least desirable prevalence rates for ten of the fourteen selected health indicators including cardiovascular disease and diabetes.
If the nation received this report on the health status of any of the above minority groups, there would be public outrage and calls for increased funding. But, because it involves people with disabilities, it falls upon us to demand that the health people with disabilities, be as high a priority as any other minority group.
For more information on the Health Disparities Chart Book and to download a copy, visit http://iod.unh.edu/Projects/health_disparities/chartbook.aspx
Among the key findings in the report:
• If people with disabilities were a formally recognized minority group, at 19% of the population, they would be the largest minority group in the United States.
• The highest proportion of people who say their health is fair or poor is found in people with disabilities (40 percent, compared to 23 percent of Hispanics, 22 percent of American Indian/Alaska Natives, 18 percent of blacks, and 8 percent of Asians).
• People with disabilities have the least desirable prevalence rates for ten of the fourteen selected health indicators including cardiovascular disease and diabetes.
If the nation received this report on the health status of any of the above minority groups, there would be public outrage and calls for increased funding. But, because it involves people with disabilities, it falls upon us to demand that the health people with disabilities, be as high a priority as any other minority group.
For more information on the Health Disparities Chart Book and to download a copy, visit http://iod.unh.edu/Projects/health_disparities/chartbook.aspx
Monday, August 22, 2011
What Is This Cloud Computing?
I have been asking myself this question each time I have read about cloud computing in the pages of the business section and having no idea what it meant. The need to learn more became acute when I was asked to participate in a conversation at the Coleman Institute at the University of Colorado, titled:”Implications of Cloud Computing for Residential Support and Service for People with Disabilities” in October. .This conversation is going to include service providers, consumers and advocates, technologists, law and policy specialists.
I have learned that the cloud is going to be a game changer for people with disabilities. If you thought the IPad was revolutionary, we have seen nothing (and I believe the IPad is a game changer for people with disabilities). The cloud is going to be universe changing.
There is already an international initiative, the Global Public Inclusive Infrastructure (GPII) initiative that is already thinking and planning and we need to be informed and get involved so we can shape the thinking and policy that will come out of this initiative. For example, they are already shaping how people with disabilities will access all forms of technology in a way that will make sense to each user. Imagine, each person with a disability (or me) will have a unique identifier (stored in the cloud). Every time the person accesses their mobile phone, PDA. notebook, laptop, net book, computer, or any devise with a screen (Metro card ticket machines, ATM machines, etc), the interface will look the same because the user will be identified and the font, font size, color, background color, layout, will look the way they want. A visually impaired person will see the size and color that best suits them, the voice commands will be at the right volume; a person with a cognitive disability will see the same screen layout each time they access technology.
All this is just the beginning and important because as budget pressures increase, we must find less labor intensive ways to provide services and as in-person supports become less common, people will need to become more independent in their use of the web because their service providers may be at a remote location, monitoring supports for lots of people..
I have learned that the cloud is going to be a game changer for people with disabilities. If you thought the IPad was revolutionary, we have seen nothing (and I believe the IPad is a game changer for people with disabilities). The cloud is going to be universe changing.
There is already an international initiative, the Global Public Inclusive Infrastructure (GPII) initiative that is already thinking and planning and we need to be informed and get involved so we can shape the thinking and policy that will come out of this initiative. For example, they are already shaping how people with disabilities will access all forms of technology in a way that will make sense to each user. Imagine, each person with a disability (or me) will have a unique identifier (stored in the cloud). Every time the person accesses their mobile phone, PDA. notebook, laptop, net book, computer, or any devise with a screen (Metro card ticket machines, ATM machines, etc), the interface will look the same because the user will be identified and the font, font size, color, background color, layout, will look the way they want. A visually impaired person will see the size and color that best suits them, the voice commands will be at the right volume; a person with a cognitive disability will see the same screen layout each time they access technology.
All this is just the beginning and important because as budget pressures increase, we must find less labor intensive ways to provide services and as in-person supports become less common, people will need to become more independent in their use of the web because their service providers may be at a remote location, monitoring supports for lots of people..
Wednesday, August 17, 2011
What is "Typical" ?
We use the word so often, that most of us hardly give notice to what "typical" means. This week, however, I have been thinking about it ever since a former student contacted me. Greg shared with me that he was living in Texas, working , had gone to college and was collaborating with a filmaker about a film about his successful life.. It got me thinking about a question that I am frequently asked, "What is a typical Cushing student?". Greg says that part of his his success are the opportunities he received at Cushing and for the staff who encouraged him to pursue his dreams.Since few of our students go to 4 year colleges, did that mean that Greg was not typical? While I was pondering that thought, yesterday I was preparing to do a live call in with the local radio station, WATD. I called into the number I was given and the man who answered the phone and gave me my instructions, also shared this with me. He was a Cushing graduate, had a car, lived in his own apartment and worked his dream job at the radio station. He also said he owed his success to Cushing. Is he typical?
The answer is that there is no typical Cushing student. What is typical is the belief that we hold for every student and person we serve-to provide them with opoprtunities to learn, grow and to be an independent as possible.
The answer is that there is no typical Cushing student. What is typical is the belief that we hold for every student and person we serve-to provide them with opoprtunities to learn, grow and to be an independent as possible.
Monday, August 1, 2011
A Picture is Worth a Thousand Words
Friday, July 22, 2011
Special Event-Expect Delays at Exit 17
This morning, as I was driving to work, the above sign greeted me as I drove to work. It was meant for those entering the Mass Pike from the Ted Williams tunnel. In spite of the fact, that I was heading down Rt. 93, the sign gave me pause. The special event was really not a special event, but a funeral that was going to be held a few hours later in Newton. There was good reason to expect delays because when a good person or a young person is buried, their funeral attracts many mourners. Today a very good person was buried and she was taken from us too young.
Many wonderful things have been said about Myra Hiatt Kraft and as many of us have learned, they were all true. She was a woman devoted to her family and to philanthropy. Many of of her causes were born out of her own experiences. Her father's parents, sisters and brother were exterminated in Nazi concentration camps and she grew up with a devotion to Israel and to Brandeis, from which she later graduated. Her commitment to philanthropy was not limited to Jewish causes, in fact, Boston College, Holy Cross and Catholic Charities received major support from her generosity. And then there were the countless secular causes, most notable the Boys and Girls Club of Boston.
I never met Myra, but I felt her presence. While I loved seeing her cheer loudly for our New England Patriots, it was the knowledge of her many acts of selfless kindness, that made me proud she lived among us. I was not among the mourners at Temple Emannuel in Newton this morning but I join the millions across the globe who will miss her.
Monday, July 18, 2011
From Children's Hospital's Blog
The following was written by Brian Skotko , MD, MPP, a Physician at Children’s Hospital Boston’s Down Syndrome Program. It’s in response to a feature in GQ magazine that used insensitive language.
Brian Skotko and his sister, Kristin
On July 15, John B. Thompson of GQ magazine slammed Bostonians as the worst dressed in the nation. Evidently, our beloved Beantown is actually a “bad-taste storm sewer” where all the worst fashion ideas come to “stagnate and putrefy.” He further decries, “Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”
Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister.
My sister, Kristin, has Down syndrome, and let me explain what “Style Down Syndrome” really is. “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist.
Style Down Syndrome is strong-willed, persevering, and forgiving—because it has to be.
People with Down syndrome are ridiculed on a daily basis. Although not as obvious as GQ’s sport, children with Down syndrome do not always get invited to birthday parties just because they have Down syndrome. Young adults, freshly minted from high school, sometimes have trouble finding post-secondary opportunities. And, adults with Down syndrome are often the first to be fired when the economy tanks.
All of this comes at a time when people with Down syndrome are achieving previously unimagined successes. They are graduating, working, living and loving within our communities. So, why do people underestimate their abilities? It must be because they do not know someone with Down syndrome. Because, if they did, they would come to appreciate the life lessons that accompany their extra chromosome.
If my friends who are black were mocked, they would not take it. If my friends who are gay were slurred, they would not take it. My 400,000 fellow Americans with Down syndrome have been cheapened, and I will not take it. I invite GQ magazine to introduce its readers to real people with Down syndrome through the My Great Story campaign of the National Down Syndrome Society.
Brian Skotko and his sister, Kristin
On July 15, John B. Thompson of GQ magazine slammed Bostonians as the worst dressed in the nation. Evidently, our beloved Beantown is actually a “bad-taste storm sewer” where all the worst fashion ideas come to “stagnate and putrefy.” He further decries, “Boston suffers from a kind of Style Down Syndrome , where a little extra ends up ruining everything.”
Go ahead, GQ, and mock my blue whale-emblemed Nantucket-red pants. Laugh if you want at the loud argyles that I prefer to wear with my black suit. I don’t even care if you dismiss the sexy pink polka-dotted tie that I like to wear with my blue-checkered shirt in clinic. But, whatever you do, do not mess with my sister.
My sister, Kristin, has Down syndrome, and let me explain what “Style Down Syndrome” really is. “Style Down Syndrome” is smiling when everyone else prefers to frown. It’s spending three summers, in sheer determination, learning to ride a bike because you want the freedom to be like everyone else. It’s singing tunes from Grease at the top of your lungs with your friends. It’s celebrating a third-place victory at a swim meet with as much gusto as the gold medalist.
Style Down Syndrome is strong-willed, persevering, and forgiving—because it has to be.
People with Down syndrome are ridiculed on a daily basis. Although not as obvious as GQ’s sport, children with Down syndrome do not always get invited to birthday parties just because they have Down syndrome. Young adults, freshly minted from high school, sometimes have trouble finding post-secondary opportunities. And, adults with Down syndrome are often the first to be fired when the economy tanks.
All of this comes at a time when people with Down syndrome are achieving previously unimagined successes. They are graduating, working, living and loving within our communities. So, why do people underestimate their abilities? It must be because they do not know someone with Down syndrome. Because, if they did, they would come to appreciate the life lessons that accompany their extra chromosome.
If my friends who are black were mocked, they would not take it. If my friends who are gay were slurred, they would not take it. My 400,000 fellow Americans with Down syndrome have been cheapened, and I will not take it. I invite GQ magazine to introduce its readers to real people with Down syndrome through the My Great Story campaign of the National Down Syndrome Society.
Thursday, July 7, 2011
Tuesday, June 21, 2011
Special Olympics World Summer Games ATHENS 2011
Special Olympics World Summer Games ATHENS 2011
On Friday, I will be celebrate the gathering of 7000 Special Olympic athletes from 180 countries who will begin competition in Athens at the Special Olympic World Games. I have the honor to be marching in Opening Ceremonies with the delegation from the British Virgin Islands. The true honor, however, comes from witnessing the skill, courage and determination of these amazing athletes as they compete. I look forward to meeting as many athletes from as many countries as I can while I am in Greece.
On Friday, I will be celebrate the gathering of 7000 Special Olympic athletes from 180 countries who will begin competition in Athens at the Special Olympic World Games. I have the honor to be marching in Opening Ceremonies with the delegation from the British Virgin Islands. The true honor, however, comes from witnessing the skill, courage and determination of these amazing athletes as they compete. I look forward to meeting as many athletes from as many countries as I can while I am in Greece.
Monday, June 6, 2011
Best Buddies Challenge promotes friendship | CapeCodOnline.com
 |
| Cushing students Gabe and Matt rocked out at the after party with Natasha Bedingfield after competing in the Friendship Ride. |
Thursday, June 2, 2011
Spring Has Arrived
There is nothing better than being able to hold classes outside after a long and snow filled winter. This week, our students enjoyed the lovely weather and the opportunity to enjoy a music class with teacher RoseAnna Bragdon Cyr.
Wednesday, May 25, 2011
Boston Herald Editorial-$16 M to care for 14 people at Fernald
When it comes to the drawn-out closure of the Fernald Developmental Center the old stereotypes get turned upside down. This isn’t about faceless bureaucrats pinching pennies; in fact the state today is spending too much.
And the people who are unhappy about it aren’t just riled-up taxpayers — they’re advocates for the scores of disabled individuals in Massachusetts who must wait for services because there just isn’t enough money to go around.
Scheduled to close last July, Fernald remains open while the state considers appeals brought on behalf of residents set for transfer to other facilities.
But as the process drags out, the state is spending millions to care for the remaining residents of the Waltham campus, who today number all of 14. Last year the cost was $16 million. Gary Blumenthal, president of the Association of Developmental Disabilities Providers, labeled those costs “excessive.”
“They are the cost of delay and they are costing thousands of families the ability to gain services while preventing the state from effectively and efficiently using their limited dollars wisely,” he said.
Certainly families and guardians are entitled to act in what they feel is the best interest of the individuals in their care, but every dollar spent at Fernald is a dollar that isn’t available for the 30,000 individuals in need of services in the community or at home.
Blumenthal and other advocates are back at the State House this week, fighting proposed cuts to human services for fiscal 2012. They argue the pain would be made easier if the state weren’t sinking so much money into a facility like Fernald, and it’s impossible to argue that point.
And the people who are unhappy about it aren’t just riled-up taxpayers — they’re advocates for the scores of disabled individuals in Massachusetts who must wait for services because there just isn’t enough money to go around.
Scheduled to close last July, Fernald remains open while the state considers appeals brought on behalf of residents set for transfer to other facilities.
But as the process drags out, the state is spending millions to care for the remaining residents of the Waltham campus, who today number all of 14. Last year the cost was $16 million. Gary Blumenthal, president of the Association of Developmental Disabilities Providers, labeled those costs “excessive.”
“They are the cost of delay and they are costing thousands of families the ability to gain services while preventing the state from effectively and efficiently using their limited dollars wisely,” he said.
Certainly families and guardians are entitled to act in what they feel is the best interest of the individuals in their care, but every dollar spent at Fernald is a dollar that isn’t available for the 30,000 individuals in need of services in the community or at home.
Blumenthal and other advocates are back at the State House this week, fighting proposed cuts to human services for fiscal 2012. They argue the pain would be made easier if the state weren’t sinking so much money into a facility like Fernald, and it’s impossible to argue that point.
Thursday, May 19, 2011
Israel Unlimited Visits Cushing
Our students and staff joined with representatives from non-profits, government ministries and self advocates from Israel this week. They were in the United States visiting innovative and creative programs in New York and Massachusetts. We were honored that we were included on their itinerary.Wednesday, May 11, 2011
President Obama Appoints Our Friend Jim Brett
James T. Brett, Appointee for Chair, President’s Committee for People with Intellectual Disabilities
James T. Brett is the President and CEO of The New England Council, a position he has held since 1996. Prior to leading the Council, Mr. Brett served in the Massachusetts House of Representatives for 15 years. He currently serves as the Chairman of the Massachusetts Governor’s Commission on Intellectual Disability, and sits on the Board of Directors of the Massachusetts Association for Mental Health, and the Advisory Councils of the Robert F. Kennedy Children’s Action Corps and the New England Center for Children. Mr. Brett has been honored with several awards for his advocacy for the disabled, including receiving the Action for Boston Community Development’s Lifetime Public Service Award, the Massachusetts Special Olympics’ Distinguished Leadership Award, and the Hospice of Boston’s Humanitarian of the Year Award. In 1996, Bay Cove Human Services of Boston named a new community home for disabled adults "Brett House" in his honor. Mr. Brett is a graduate of American University in Washington, DC, and holds Masters Degrees in Public Administration from Suffolk University and from the John F. Kennedy School of Government at Harvard University.
James T. Brett is the President and CEO of The New England Council, a position he has held since 1996. Prior to leading the Council, Mr. Brett served in the Massachusetts House of Representatives for 15 years. He currently serves as the Chairman of the Massachusetts Governor’s Commission on Intellectual Disability, and sits on the Board of Directors of the Massachusetts Association for Mental Health, and the Advisory Councils of the Robert F. Kennedy Children’s Action Corps and the New England Center for Children. Mr. Brett has been honored with several awards for his advocacy for the disabled, including receiving the Action for Boston Community Development’s Lifetime Public Service Award, the Massachusetts Special Olympics’ Distinguished Leadership Award, and the Hospice of Boston’s Humanitarian of the Year Award. In 1996, Bay Cove Human Services of Boston named a new community home for disabled adults "Brett House" in his honor. Mr. Brett is a graduate of American University in Washington, DC, and holds Masters Degrees in Public Administration from Suffolk University and from the John F. Kennedy School of Government at Harvard University.
Monday, May 2, 2011
Reflecting on Today
Today, many of us awoke with the news that Osama Bin Laden had been killed. Throughout the United States and the world, this news was met with much joy. However, it also gave many pause to ask, "How can we be celebrating the killing of a life?" I found an answer that suits me. The Scripture tells us (Amos 5:15) not only to "love good", but also to "hate evil".
Thursday, March 24, 2011
Simple Thought for Today
Unknown author
Monday, March 21, 2011
Thursday, March 17, 2011
Will you "Let Us In!"?
March 2st is World Down Syndrome Day and is known by the date. Since there are 3 copies of the 21st chomosome that make up Down syndrome, it is fitting that we celebrate on the 21st day of the 3rd month-get it?
Monday, March 14, 2011
ABLE Act-Important for our Families
Note from Jo Ann: Last month , I traveled to DC to speak with membersof our congressional delegation about the ABLE Act. Congressman Crenshaw says it well:
Editorial by Congressman Ander Crenshaw
Equality. Americans have strived to open the door to its strength across generations of our nation’s history. And, no population may understand the dedication and footwork needed to realize a level playing field for its players more than the disabled.
Great strides have been made to ensure that fewer of the disabled fall through society’s cracks. But there is ample ground to cover before they have the same opportunities as other Americans. A good place to continue that fight is in the area of financial planning.
Today, the federal government encourages Americans to save for future needs through a variety of tax-advantaged savings accounts: individual retirement accounts, education savings accounts (529s), medical savings accounts, and employer savings accounts (401-ks). With the right tools in place, life’s horizon can be brighter. Without them, dreams can pass by in the blink of an eye.
That’s why I am so encouraged by the growing number of supporters behind my “Achieving a Better Life Experience Act” (ABLE) to create tax-deferred savings accounts for the disabled. To date, 184 House Members and 22 United States Senators are co-sponsors of this legislation. Special Olympics, the National Down Syndrome Society, Autism Speaks, and National Fragile X Foundation are among a long list of organizations also supporting the bill. All understand the need to crack open a wider door to equality for the disabled.
The average cost of raising a child with a significant medical disability is more than $1 million over the course of their lifetime. Continuing education, transportation, housing, and medical care make up some of the predictable costs on that staggering bill.
ABLE accounts would relieve some of that burden, by allowing parents with disabled children or family members of disabled individuals to invest through a tax deferred savings account that could be drawn from for these future expenses. No longer would they have to stand aside and watch as others use IRS-sanctioned tools like 529 education savings accounts to lay the groundwork for a brighter future. They would be able to do so for their child as well.
Creating an ABLE account is as simple as opening an account at the local bank. Anyone currently receiving supplemental security income (SSI) benefits would be eligible, and qualified expenses include educational and transportation expenses, medical and dental care, and employment and training support.
Anyone may contribute to an ABLE account and rollovers would be allowed without penalty; however contributions to these accounts are capped at $500,000. Under the proposal, the principle in the account would accrue interest tax free during the life of the beneficiary. When distributions are made to the beneficiary for qualified expenses, the distributions are excluded from the gross income of the beneficiary.
In real life terms, that means young Sydney Leach, who was born with Down Syndrome in Jacksonville, Florida and is now finishing first grade, can plan for her future. A bright student who can read, write, and perform simple arithmetic, she hopes to gain a post-secondary education. Eventually, Sydney will work and earn a salary just as millions of other Americans do. Under current law, however, she cannot keep more than $2,000 in assets (whether earned or through gifts) or she will lose her benefits, such as Medicaid and Social Security Disability Insurance. With an ABLE account, that roadblock would be lifted enabling her to save and use her earnings to cover qualified expenses.
The cost to reform U.S. tax code to offer ABLE accounts would be minimal, but the positive impact for Sydney Leach, her family, and others who are struggling to cope with an uncertain future would be sizeable.
They and all the disabled deserve that opportunity. A change in the tax code so they can Achieve a Better Life Experience is a step forward toward equality with every other American – a step worth taking.
Editorial by Congressman Ander Crenshaw
Equality. Americans have strived to open the door to its strength across generations of our nation’s history. And, no population may understand the dedication and footwork needed to realize a level playing field for its players more than the disabled.
Great strides have been made to ensure that fewer of the disabled fall through society’s cracks. But there is ample ground to cover before they have the same opportunities as other Americans. A good place to continue that fight is in the area of financial planning.
Today, the federal government encourages Americans to save for future needs through a variety of tax-advantaged savings accounts: individual retirement accounts, education savings accounts (529s), medical savings accounts, and employer savings accounts (401-ks). With the right tools in place, life’s horizon can be brighter. Without them, dreams can pass by in the blink of an eye.
That’s why I am so encouraged by the growing number of supporters behind my “Achieving a Better Life Experience Act” (ABLE) to create tax-deferred savings accounts for the disabled. To date, 184 House Members and 22 United States Senators are co-sponsors of this legislation. Special Olympics, the National Down Syndrome Society, Autism Speaks, and National Fragile X Foundation are among a long list of organizations also supporting the bill. All understand the need to crack open a wider door to equality for the disabled.
The average cost of raising a child with a significant medical disability is more than $1 million over the course of their lifetime. Continuing education, transportation, housing, and medical care make up some of the predictable costs on that staggering bill.
ABLE accounts would relieve some of that burden, by allowing parents with disabled children or family members of disabled individuals to invest through a tax deferred savings account that could be drawn from for these future expenses. No longer would they have to stand aside and watch as others use IRS-sanctioned tools like 529 education savings accounts to lay the groundwork for a brighter future. They would be able to do so for their child as well.
Creating an ABLE account is as simple as opening an account at the local bank. Anyone currently receiving supplemental security income (SSI) benefits would be eligible, and qualified expenses include educational and transportation expenses, medical and dental care, and employment and training support.
Anyone may contribute to an ABLE account and rollovers would be allowed without penalty; however contributions to these accounts are capped at $500,000. Under the proposal, the principle in the account would accrue interest tax free during the life of the beneficiary. When distributions are made to the beneficiary for qualified expenses, the distributions are excluded from the gross income of the beneficiary.
In real life terms, that means young Sydney Leach, who was born with Down Syndrome in Jacksonville, Florida and is now finishing first grade, can plan for her future. A bright student who can read, write, and perform simple arithmetic, she hopes to gain a post-secondary education. Eventually, Sydney will work and earn a salary just as millions of other Americans do. Under current law, however, she cannot keep more than $2,000 in assets (whether earned or through gifts) or she will lose her benefits, such as Medicaid and Social Security Disability Insurance. With an ABLE account, that roadblock would be lifted enabling her to save and use her earnings to cover qualified expenses.
The cost to reform U.S. tax code to offer ABLE accounts would be minimal, but the positive impact for Sydney Leach, her family, and others who are struggling to cope with an uncertain future would be sizeable.
They and all the disabled deserve that opportunity. A change in the tax code so they can Achieve a Better Life Experience is a step forward toward equality with every other American – a step worth taking.
 |
| Senator Scott Brown |
 |
| Rep. John Tierney of my home district. |
 |
| A blurry pic of Sen. John Kerry |
Friday, March 11, 2011
The "Shut Up Sisters" Are Coming to Cushing-October 1
Meet the “Shut Up Sisters”
Mary Kate and Ashley minus the twinness and the thinness.
Gina (Terrasi) Gallagher and Patricia (Terrasi) are sisters who share a love of wine, humor, and writing (excluding checkwriting). They are also among the growing number of parents raising children with disabilities. Inspired by the success of their sisterly heroines, Mary Kate and Ashley, and fed up with listening to parents brag about their “perfect children” and never asking about theirs, the sisters decided to seek therapy by writing a book. So in 2006, they self-published their first book, Shut Up About Your Perfect Kid! The Movement of Imperfection, which explores the humorous, heartwarming side of raising an imperfect child in a world pre-occupied with perfection.
It wasn’t long before the book starting selling and the sisters were asked to come and speak at parenting, autism, and mental health conferences in Massachusetts and other exciting parts of the country. “Pack your bags, Gene, we’re going to Akron, OH, the birthplace of rubber.”
With strong sales, the book was picked up by Random House and in August 2010, an expanded version, Shut Up About Your Perfect Kid! A Survival Guide for Ordinary Parents of Special Kids, was introduced. The new book includes helpful tips, information, and inspiration to help caregivers of special children cope with the challenges of managing “imperfect” children in a world-pre-occupied with perfection. The book features a Foreword by Dr. Ross Greene and prescriptive advice from Lee Ann Karg, M Ed, a Disability Advocate.
They will be speaking at our Hanover campus on Ocotber 1, 2011 as our Opening Act of our fabulous fall Harvest Festival.
Mary Kate and Ashley minus the twinness and the thinness.
Gina (Terrasi) Gallagher and Patricia (Terrasi) are sisters who share a love of wine, humor, and writing (excluding checkwriting). They are also among the growing number of parents raising children with disabilities. Inspired by the success of their sisterly heroines, Mary Kate and Ashley, and fed up with listening to parents brag about their “perfect children” and never asking about theirs, the sisters decided to seek therapy by writing a book. So in 2006, they self-published their first book, Shut Up About Your Perfect Kid! The Movement of Imperfection, which explores the humorous, heartwarming side of raising an imperfect child in a world pre-occupied with perfection.
It wasn’t long before the book starting selling and the sisters were asked to come and speak at parenting, autism, and mental health conferences in Massachusetts and other exciting parts of the country. “Pack your bags, Gene, we’re going to Akron, OH, the birthplace of rubber.”
With strong sales, the book was picked up by Random House and in August 2010, an expanded version, Shut Up About Your Perfect Kid! A Survival Guide for Ordinary Parents of Special Kids, was introduced. The new book includes helpful tips, information, and inspiration to help caregivers of special children cope with the challenges of managing “imperfect” children in a world-pre-occupied with perfection. The book features a Foreword by Dr. Ross Greene and prescriptive advice from Lee Ann Karg, M Ed, a Disability Advocate.
They will be speaking at our Hanover campus on Ocotber 1, 2011 as our Opening Act of our fabulous fall Harvest Festival.
Wednesday, March 9, 2011
Read Across America Came to Cushing
Thank you to all of our wonderful volunteers who recently read at the Cardinal Cushing 2011 Read Across America Celebration! We also celebrated the birthday of the late Dr. Suess. The highlight of the morning for me was student Lee R., who rapped and Matt F. who read a Dr. Suess book. They were the stars of the morning!!!!
Students and staff alike had a relaxing morning of stories and rhymes, provided by the following volunteers:
This important event further enhances our student’s joy of reading and whimsy. We all appreciate the efforts of everyone involved.
 |
| Matt |
Students and staff alike had a relaxing morning of stories and rhymes, provided by the following volunteers:
Lee R.
The McElmans
Jo Ann Simons
Larry Sauer
The State Street Volunteers
John Pappone
Roberta Pulaski
Matt F
and
The OT, PT and Speech Specialists!
 |
| The McElman family |
Wednesday, March 2, 2011
Thursday, February 17, 2011
Our Own Shannon Driscoll Writes
Reprinted with permission from the Massachusetts Down Syndrome Congress February 2011 e-Newsletter
On October 1, 1979, the Pope came to Boston and so did I. My name is Shannon Driscoll and I turned 31 years old on October 1, 2010. I am an adult who was born with Down syndrome. I am the middle child. I have an older sister, Danielle, and a younger sister, Jacqui. Neither of my sisters live at home. This past July, I was the maid of honor in my sister Jacqui's wedding.
My parents tell me that I had early intervention when I was a baby. I went to Tuft's New England Medical Center to the genetics clinic. I went to a program once a month at Children's Hospital Boston. I went to a speech group in Dorchester and went to school when I was 3 years old. I did not have serious medical problems when I was born, but went to a lot more doctors than my two sisters. I have had many sets of tubes in my ears. I am on medicine for a thyroid problem. I was diagnosed with sleep apnea last year, so I have to wear a sleep mask every night. It is not as bad as I thought it would be and I feel more awake and energetic each morning. Basically, I am very healthy. I still go to my pediatrician, Dr. Sisson, when I am sick because my parents and I really like her.
I lived in South Boston until I was 5 years old and have been in Braintree ever since. I went to Boston Public Schools, St. Coletta Day School, and then the Braintree Public Schools. In addition to learning reading and math in elementary school, I starred in many plays such as Peter Pan, Cinderella, The Wizard of Oz, and Mary Poppins. I always loved school and I still love to learn new things. I take reading, writing, and math at Massasoit Community College one night a week. I never get tired of learning. I have six college credits in child care and I would love to get my associate's degree. Braintree High School was my favorite school. I was in the Project Prove Program for students with special needs and took other classes such as English, Spanish, Italian and Drama. I made many new friends in Project Prove and outside of my class.I am glad my friends accepted me for who I am.
Now that I am out of school, I work at Stop and Shop in Braintree. I was hired as a bagger but then promoted to cashier. I love cashiering but I still help bagging when they need me. I get paid holiday pay, vacations, and raises every year.I am in the union at Stop and Shop. I also attend South Shore Industries in Braintree which is a workshop. I go there when I am not working because I get to see all of my friends.
I am involved in many activities. I belong to the Arc of the South Shore and go on outings one Saturday evening a month. We go to plays, restaurants in the North End, sports events and many other places. I go to Friendship Club in Norwell, where we make dinner, play board games, and just socialize with one another. I also bowl once a week, and play basketball as well as softball. I swim for the Special Olympics on a team known as the SHARCS. I also volunteer on Saturdays in a program called Super Saturdays, which is for young children in Braintree who have special needs. I volunteer at Gillette Stadium to raise money for our activities. For all you football fans please come to the Barbecue Blitz in Section 140 and come to my register. I am usually very busy but I like it this way. I am known as a social butterfly. I love to write when I am home in my bedroom. I also use the computer every day. I email my friends and I belong to Facebook. I recently bought myself a laptop with money I have saved. My mother is happy because now I am not always on her computer.
I have many friends. Three of my girlfriends and I take turns having sleepovers at each of our homes. We watch movies, have "girl time", and just love being together. I also have a best friend.
I am going on a cruise to the Bahamas with my friends in February. This trip is sponsored by Friendship Home in Norwell.
There are many things that I would like to do in the future. I have always loved to write, especially poetry, letters, and in my journals. I really enjoy photography. I also love public speaking and taking care of animals, especially dogs. My favorite dog is my sister's English bulldog named Hazel. Someday in the future I would like to take care of animals and become a veterinarian or a veterinarian's assistant. I would also love to be a public speaker. Since I love to write I would love to write articles or submit my poetry to either a magazine or to a newspaper.
I feel I am entitled to pursue my dreams like my two sisters did. It is harder for me, but so far I have achieved what others have achieved. Things just take me longer.
I have a great family who love and support me, but at 31 years old, I don't like being the only one at home with my parents. I would love to live with my friends who have common interests but for right now, that is not an option because there is no funding for me to be able to live on my own.
Right now, I am engaged to my fiancé, Michael Goodhue. Someday we would like to get married, but this is going to be difficult because I still need to pursue a career I enjoy and I still do not have housing.
Even though I have Down Syndrome, I never give up on my dreams. I have a great life. I love my life.
Thank You.
On October 1, 1979, the Pope came to Boston and so did I. My name is Shannon Driscoll and I turned 31 years old on October 1, 2010. I am an adult who was born with Down syndrome. I am the middle child. I have an older sister, Danielle, and a younger sister, Jacqui. Neither of my sisters live at home. This past July, I was the maid of honor in my sister Jacqui's wedding.
My parents tell me that I had early intervention when I was a baby. I went to Tuft's New England Medical Center to the genetics clinic. I went to a program once a month at Children's Hospital Boston. I went to a speech group in Dorchester and went to school when I was 3 years old. I did not have serious medical problems when I was born, but went to a lot more doctors than my two sisters. I have had many sets of tubes in my ears. I am on medicine for a thyroid problem. I was diagnosed with sleep apnea last year, so I have to wear a sleep mask every night. It is not as bad as I thought it would be and I feel more awake and energetic each morning. Basically, I am very healthy. I still go to my pediatrician, Dr. Sisson, when I am sick because my parents and I really like her.
I lived in South Boston until I was 5 years old and have been in Braintree ever since. I went to Boston Public Schools, St. Coletta Day School, and then the Braintree Public Schools. In addition to learning reading and math in elementary school, I starred in many plays such as Peter Pan, Cinderella, The Wizard of Oz, and Mary Poppins. I always loved school and I still love to learn new things. I take reading, writing, and math at Massasoit Community College one night a week. I never get tired of learning. I have six college credits in child care and I would love to get my associate's degree. Braintree High School was my favorite school. I was in the Project Prove Program for students with special needs and took other classes such as English, Spanish, Italian and Drama. I made many new friends in Project Prove and outside of my class.I am glad my friends accepted me for who I am.
Now that I am out of school, I work at Stop and Shop in Braintree. I was hired as a bagger but then promoted to cashier. I love cashiering but I still help bagging when they need me. I get paid holiday pay, vacations, and raises every year.I am in the union at Stop and Shop. I also attend South Shore Industries in Braintree which is a workshop. I go there when I am not working because I get to see all of my friends.
I am involved in many activities. I belong to the Arc of the South Shore and go on outings one Saturday evening a month. We go to plays, restaurants in the North End, sports events and many other places. I go to Friendship Club in Norwell, where we make dinner, play board games, and just socialize with one another. I also bowl once a week, and play basketball as well as softball. I swim for the Special Olympics on a team known as the SHARCS. I also volunteer on Saturdays in a program called Super Saturdays, which is for young children in Braintree who have special needs. I volunteer at Gillette Stadium to raise money for our activities. For all you football fans please come to the Barbecue Blitz in Section 140 and come to my register. I am usually very busy but I like it this way. I am known as a social butterfly. I love to write when I am home in my bedroom. I also use the computer every day. I email my friends and I belong to Facebook. I recently bought myself a laptop with money I have saved. My mother is happy because now I am not always on her computer.
I have many friends. Three of my girlfriends and I take turns having sleepovers at each of our homes. We watch movies, have "girl time", and just love being together. I also have a best friend.
I am going on a cruise to the Bahamas with my friends in February. This trip is sponsored by Friendship Home in Norwell.
There are many things that I would like to do in the future. I have always loved to write, especially poetry, letters, and in my journals. I really enjoy photography. I also love public speaking and taking care of animals, especially dogs. My favorite dog is my sister's English bulldog named Hazel. Someday in the future I would like to take care of animals and become a veterinarian or a veterinarian's assistant. I would also love to be a public speaker. Since I love to write I would love to write articles or submit my poetry to either a magazine or to a newspaper.
I feel I am entitled to pursue my dreams like my two sisters did. It is harder for me, but so far I have achieved what others have achieved. Things just take me longer.
I have a great family who love and support me, but at 31 years old, I don't like being the only one at home with my parents. I would love to live with my friends who have common interests but for right now, that is not an option because there is no funding for me to be able to live on my own.
Right now, I am engaged to my fiancé, Michael Goodhue. Someday we would like to get married, but this is going to be difficult because I still need to pursue a career I enjoy and I still do not have housing.
Even though I have Down Syndrome, I never give up on my dreams. I have a great life. I love my life.
Thank You.
Wednesday, February 16, 2011
Education Unlocks Potential
Swampscott's Jonathan Derr advocates for people with Down syndrome and others with disabilities to go to college.
By Terry Date
In Jonathan Derr’s mind, school is a mighty thing.
The 31-year-old, who has Down syndrome, graduated from Swampscott High School — and Cape Cod Community College.
Today he works two jobs and is on the road to getting his driver’s license.
But education has been the key to his life.
It has fed his mind and made work, a social life and driving possible.
Now, he wants others with disabilities including Down syndrome to have a shot at college.
High School
Derr, at home in his family’s Swampscott living room over the holidays, said he arrived to a crossroads early in high school.
He had attended Marblehead schools since he was a child because of the special programs the district offered. Then, early in high school, he changed directions because he did not feel challenged there.
Derr pauses before he speaks, then speaks carefully, choosing words that reflect what he wants to say.
“Mom called Swampscott High,” he said. “It was amazing. All my friends were there.”
He transferred, completing his sophomore through senior years at the school, which, by then, could support him.
“Basically, I found life,” he said.
He managed the lacrosse team, helped the basketball team and played on the golf team.
Every Friday he went to someone else’s house for dinner.
Also, he was challenged academically.
“I kind of focused on the books more,” he said. “History, math, science, wood shop, health.”
He graduated at 18 years old.
College
At 18, Derr learned about a program on Cape Cod that helps people with disabilities get ready for the outside world.
He also learned that he could attend Cape Cod Community College, one of the very few colleges in New England that offer programs for students with Down syndrome.
Derr learned cooking, office, retail and maintenance skills. He graduated from both the life skills and college programs.
He has worked six years at a golf course, starting out shagging balls on the driving range then, in 2006, being promoted to the Pro Shop.
Advocacy
More recently he has taken his experience back to the classroom, telling younger students with disabilities that their futures are bright if they work hard.
“No one likes to be held back,” he said.
Programs that bring students with disabilities and students without them together benefit both groups, he said. They learn more about each other.
His mother, Jo Ann Simons, President and CEO of the Cardinal Cushign Centers, chairman of the National Down Syndrome Society and other organizations that advocate for people with disabilities, says Masachusetts is a leader in post-secondary education but not in the education of students with disabilities.
Brian Skotko, a doctor at Children's Hospital Boston who advocates for people with Down syndrome, says they have proven that with appropriate support they do succeed in grade schools and high schools.
Many people with Down syndrome want to develop their talents to find meaningful employment but few colleges around the country give them that opportunity, he said.
“We need more postsecondary opportunities for young adults with Down syndrome,” Skotko said.
Lessons
Derr’s opportunity gave him a chance to learn.
He said he has watched and interacted with others and learned from them.
“I’m slow,” he said. “I like to watch people to see what they can do.
Basically, what I learned was that everyone has strengths and weaknesses.”
By Terry Date
In Jonathan Derr’s mind, school is a mighty thing.
The 31-year-old, who has Down syndrome, graduated from Swampscott High School — and Cape Cod Community College.
Today he works two jobs and is on the road to getting his driver’s license.
But education has been the key to his life.
It has fed his mind and made work, a social life and driving possible.
Now, he wants others with disabilities including Down syndrome to have a shot at college.
High School
Derr, at home in his family’s Swampscott living room over the holidays, said he arrived to a crossroads early in high school.
He had attended Marblehead schools since he was a child because of the special programs the district offered. Then, early in high school, he changed directions because he did not feel challenged there.
Derr pauses before he speaks, then speaks carefully, choosing words that reflect what he wants to say.
“Mom called Swampscott High,” he said. “It was amazing. All my friends were there.”
He transferred, completing his sophomore through senior years at the school, which, by then, could support him.
“Basically, I found life,” he said.
He managed the lacrosse team, helped the basketball team and played on the golf team.
Every Friday he went to someone else’s house for dinner.
Also, he was challenged academically.
“I kind of focused on the books more,” he said. “History, math, science, wood shop, health.”
He graduated at 18 years old.
College
At 18, Derr learned about a program on Cape Cod that helps people with disabilities get ready for the outside world.
He also learned that he could attend Cape Cod Community College, one of the very few colleges in New England that offer programs for students with Down syndrome.
Derr learned cooking, office, retail and maintenance skills. He graduated from both the life skills and college programs.
He has worked six years at a golf course, starting out shagging balls on the driving range then, in 2006, being promoted to the Pro Shop.
Advocacy
More recently he has taken his experience back to the classroom, telling younger students with disabilities that their futures are bright if they work hard.
“No one likes to be held back,” he said.
Programs that bring students with disabilities and students without them together benefit both groups, he said. They learn more about each other.
His mother, Jo Ann Simons, President and CEO of the Cardinal Cushign Centers, chairman of the National Down Syndrome Society and other organizations that advocate for people with disabilities, says Masachusetts is a leader in post-secondary education but not in the education of students with disabilities.
Brian Skotko, a doctor at Children's Hospital Boston who advocates for people with Down syndrome, says they have proven that with appropriate support they do succeed in grade schools and high schools.
Many people with Down syndrome want to develop their talents to find meaningful employment but few colleges around the country give them that opportunity, he said.
“We need more postsecondary opportunities for young adults with Down syndrome,” Skotko said.
Lessons
Derr’s opportunity gave him a chance to learn.
He said he has watched and interacted with others and learned from them.
“I’m slow,” he said. “I like to watch people to see what they can do.
Basically, what I learned was that everyone has strengths and weaknesses.”
Friday, February 11, 2011
Check out Nickmorseart.com
Talk about long, strange trips. Nick Morse has been on one. He was born in Boston, lived at first in Cambridge, then Hingham, then Newton and Wellesley, then Hanover where he attended the Cardinal Cushing Center for 10 years. He now resides in a group home in Watertown. He has an extraordinary pedigree -- his grandfather on his deceased mother's side, Alexander Rotow, founded color television for RCA. Perhaps it's not a surprise that Nick, despite his special needs, has applied a love of color to his art. His father has taken him to many vibrant rock concerts with spectacular stage shows -- Green Day, Aerosmith, Tool, Pearl Jam, Roger Waters, Jimmy Buffett and Godsmack to name a few -- and Nick has absorbed them all. They have also caught many animated movies and action films and have spent a lot of time at the Museum of Fine Arts looking at the work of Impressionists from Monet to Van Gogh. Nick's eyes light up when surrounded by beautiful art, and his Dad's light up to see him so happy. "He has been the love of my life", says Steve Morse, Nick's dad and former music critic at the Boston Globe for 30-plus years.
Nick Morse can be contacted at:
nickmorseart@gmail.com
Friday, February 4, 2011
Subscribe to:
Posts (Atom)