Monday, November 19, 2007
Sunday, November 11, 2007
Wednesday, October 31, 2007
Tuesday, October 30, 2007
DSRTF announces funding for a major new research program led by Dr. Roger Reeves at Johns Hopkins School of Medicine. Dr. Roger Reeves’ recent research discovered that a certain area of the brain, the cerebellum, is underdeveloped in a Down syndrome mouse model, analogous to observations in individuals with Down syndrome. These studies by Dr. Reeves and his colleagues further led to the identification of a potential drug that essentially normalizes the development of the cerebellum in the mouse model.
This new grant from DSRTF significantly extends Dr. Reeves’ research, and includes addressing two critical next questions:
Does the potential drug also correct a deficit in the development of the nerve cells in the hippocampus, a brain area involved in learning and memory?
Does the potential drug produce positive and measurable effects on learning and memory in a Down syndrome mouse model?
“The DSRTF award allows us to pursue our preliminary observations immediately without the now considerable delay that’s usually associated with obtaining federal funding,” says Dr. Reeves. “With a decrease of nearly 70 percent- from $42 to $13 million- in the amount of Down syndrome research dollars from the National Institutes of Health in the last few years the role of groups like DSRTF has become critical to continued progress in the effort to help 350,000 Americans with Down syndrome.”
This new grant adds a third novel potential therapeutic target to the DSRTF-supported research portfolio, which also includes two additional recently discovered potential therapeutic targets currently under investigation at Stanford University School of Medicine. DSRTF’s Scientific Advisory Board unanimously agreed that the new research is intriguing and closely aligns with DSRTF’s mission of accelerating research that will lead to a treatment to improve learning and memory in individuals with Down syndrome.
DSRTF gratefully acknowledges the special gift to DSRTF from Dawn and Roger Kafker making it possible to initiate and establish this exciting new research program. DSRTF also extends its thanks to all of our donors in helping DSRTF to make a significant and rapid impact in Down syndrome research through your financial support of DSRTF. For more information about Dr. Reeves' research, visit our website at www.dsrtf.org
Monday, October 29, 2007
Watch your Language
Our goal is to open doors, and keep them open. Here are a few reminders for language usage:
An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualiies and attributes that can be used to describe them.
Use "people-first" language and encourage others to do the same. For example, refer to the person as a person with Down syndrome," not the "Down syndrome person." A person with Down syndrome is not a "Down's."
Words create lasting impressions. Try not to use cliches when describing an individual with Down syndrome (such as "They're always happy."). To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that all people with Down syndrome are the same. Each person has his/her own unique strengths, capabilities, and talents. Recognize that a child is "a child wuith Down syndrome," or that an adult is "an adult with Down syndrome." Children with DS grow into adults with DS; they do not remain eternal children. Adults enjoy activities and companionship with other adults. A 24 year old with DS certainly has 24 years of life experience!
Most people want to use correct language, but even professionals stumble in their attempt. Sharing a few basic reminders will put people at ease and create a positive atmosphere for acceptance of differences.
Sunday, October 28, 2007
Saturday, October 27, 2007
- That he puts his family first...I love that!
- That he exaggerates everything...he thinks if he misses one day of surfing on the weekend, he'll get love handles....I'm laughing as I wrote that...because it is sooo true!
- That she will come out of her room after we've put her to bed to say "I love you" again and give us a kiss and a hug...I love that!
- That she knows all of the words to Rhianna's "The Umbrella Song" and belts them out in the car...doesn't matter how much I hear it, I always laugh.
- That he gives lovies on demand! He melts in my chest and bats his eyelashes...I love that!
- That his sisters tease him and tickle him and he just laughsssss hysterically every time! His laugh is contagious!
- When she gets in the car after school and sees Jack, she gets the biggest grin on her face...I love that she loves him so much!
- That when she thinks only her sister is looking, she does the booty dance...it's sooo funny!
I love my family!
Friday, October 26, 2007
Bella had her yearly opthamologist appointment where they tweaked her perscription a tad...we ordered her some new frames which should be in tomorrow or the next day...stay tuned for pics of those because they are CUUUUUUTTTEEE!!
I, of course am on weekly visits to the OB/GYN...I have 3 weeks left until baby Grant comes a callin.' The baby is sitting sideways in my tummy, and according to my OB, I'm not dilated at all...surprise surprise! Looks like this one is following in the footsteps of his sibs...I'll be giving more updates as the due date comes closer.
Thursday, October 25, 2007
Wednesday, October 24, 2007
Tuesday, October 23, 2007
by Kathleen T. Riggs PROUD President
Retardation is a word that I have always hated in all of its forms, even before it affected my life so profoundly. It stems from the school yard ridicules that children suffered when I grew up. These taunts were not directed at children with any mental challenge whatsoever, just children who didn't fit in. The bullies even mispronounced the word and I am unable to bring myself to recreate it here all of these ears later. The children with mental challenges and physical challenges were not allowed in typical classrooms when I went through school.
It wasn't until college that I first encountered more than just in passing, a person with some type of challenge. How much I wanted to get to know them better, but I was afraid largely because I never had any contact with anyone "different" while growing up. I didn't know sign language, and felt very inadequate in attempting any type of communication, even a smile. I was taught not to stare, but to look away from someone in a wheelchair and certainly not to have any contact with someone who had a mental challenge. I didn't learn this lesson from my family, but from school mates. It took me awhile to unlearn this horrible practice, and to this day, I sometimes have difficulty when I encounter someone with a challenge. Realizing the difficulty, I hope that makes me more aware and makes me strive harder to overcome.
As enlightened as I have become over the last 7 years, I still have very real trouble with the "R" word. In selecting this topic, I had hoped that my trusty Webster's dictionary would steer me toward the path of making peace with the word and then be able to use it more freely. It hasn't.
I hate it more than ever. It isn't the dictionary definition, it is what Webster added to the definition-the so called slang for (disparaging) that is offensive, characterizing a person who has mental retardation as "stupid, obtuse, or ineffective". This from Webster's 1996 edition!
What brought me to thinking seriously about my aversion to the "R" word was when I volunteered to assist the Knights of Columbus at my church with their annual "Tootsie Roll Drive from Mentally Retarded Children" earlier this year. The Knights of Columbus do wonderful work in many areas and their help with mentally challenged individuals is legendary. Hating the "R" word, I wore my yellow apron willingly, hoping against hope that they will someday get rid of "that word" and replace it with "challenged", becoming more politically correct. As aprons wear out, hopefully they will be replaced with ones that have better wording. It is time (in my opinion) that the word be eliminated completely from use. The ARC (The Association of Retarded Citizens) already no longer uses the "R" word in their literature, and many other organizations have followed their lead.
There are plenty of people out there (maybe even you!) who have no problems with the "R" word. I applaud your ability to use this word freely. I still can't do it. I probably will never be able to get past my own childhood experience, and maybe in this instance that isn't so bad. For now, I refuse to allow the "R" word to be used in connection with our son, or to be written in any reports, including doctor's and IEP reports. Maybe I am overreacting, but as I have said before, we are the people who will change perceptions, and we each have to do our part, however small, to improve the lives of our children. In my opinion, as long as the "R" word is stapled to every move they make, it will be a barrier.
First published in The Optimist (November/December, 1996
Monday, October 22, 2007
Sunday, October 21, 2007
Saturday, October 20, 2007
Friday, October 19, 2007
Thursday, October 18, 2007
Wednesday, October 17, 2007
Tuesday, October 16, 2007
Monday, October 15, 2007
Sunday, October 14, 2007
Saturday, October 13, 2007
Friday, October 12, 2007
Christina over at Prince Vince Meets the World had this up...I like it so I'm posting it too!
- One in every 800- 1000 babies is born with Down syndrome.
- Down syndrome is not related to race, nationality, religion or economic status.
- Individuals with Down syndrome are people first, with the same rights and needs as everyone else.
- Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small and medium sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.
- There’s no “S” on Down… it is Down syndrome (not Downs syndrome)
- Rather than saying “Down syndrome baby/child” say “A baby/child with Down syndrome. They are people first.
- The s on syndrome is not capitalized.
- Down syndrome is not an illness. A person either has Down syndrome or they do not. Having Down syndrome does not mean the person is sick.
- There are three types of Down syndrome- 1. nondisjunction, 2. mosaicism, 3. translocation
- Down syndrome occurs when there are three, rather than the usual two, copies of chromosome 21 in every cell of the body. Instead of 46 chromosomes, a person with Down syndrome has 47.
- The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.
- People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
- Down syndrome happens before conception. There is nothing either of the parents did, or didn’t do, to cause it. It happens when the egg or sperm, is produced with an extra copy of chromosome 21.
- Down syndrome is a Trisomy which means there are 3 copies, instead of 2, of any given chromosome. Down syndrome is also known as Trisomy 21 because of the extra 21st chromosome.
- It was Dr. Jerome Lejeune that first discovered Down syndrome in 1959, when he found the extra 21st chromosome. Some people give credit to John Langdon Down for discovering Down syndrome but he just first described the common characteristics attributed with Down syndrome.
- Common characteristics that people who have Down syndrome may have include single transverse palmar crease (a single instead of a double crease across one or both palms), almond shaped eyes, a larger than normal space between the big and second toes, and white spots on the iris known as Brushfield spots.
- Thankfully, due to advances in medical technology, individuals with Down syndrome are living longer than ever before. In 1910, children with Down syndrome were expected to survive to age nine. Now close to 80 percent of adults with Down syndrome reach age 55, and many live even longer.
- Down syndrome does not affect the feelings: happiness, sadness, anger, love, and other human feelings are the same for every one with or without bonus chromosome. So is the need for love and care.
- Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The degree of mainstreaming is based in the abilities of the individual; but the trend is for full inclusion in the social and educational life of the community.
- People with Down syndrome date, socialize and form ongoing relationships. Some are beginning to marry. Just look at Sujeet Desai and Carrie Bergeron!
Thursday, October 11, 2007
- We didn't find out Jack had DS until he was two weeks old when a very observant pediatrician questioned the shape of his eyes.
- Jack was born on time with no complications. We went home after 2 days.
- My Ultrasound did not pick up Jack's AV Canal Heart Defect, a defect specific to DS.
- Jack had Open Heart Surgery to repair his AV Canal at 8 months old.
- When I was pregnant with Jack, my AFP Quad Screen came back negative.
- Jack has Physical Therapy 2 times a week. He started at 2 months old.
- Jack goes to Group Therapy two times a week for 2 hours. He has OT, PT, Communication, Music, Cognition, and a lot more. He started at 2 months old. I go to this too.
- Our team Jammin' for Jack raises money and walks in our local Buddy Walk with many of our family and friends.
- I have met some of the most amazing moms and their children...all because I had Jack.
- It took my husband and I about a week to grieve the diagnosis once we found out...then we were moving forward.
- I found DownSyn when I was researching everything and anything I could find about DS while we were waiting for the test results to come back.
- I got pregnant with Jack when I was 30.
- Other than his heart defect, Jack has had no other health issues.
- Jack rolled over at 6 weeks, sat up one week after heart surgery at 8 months, army crawled at 12 months, pulled to a stand at 14 months, and cruised at 16 months. Next step is crawling on all fours and walking.
- Jack's first sign was "more." Two months later, he was up to 20 signs.
- Raising Jack is more normal than not.
- Jack has non-disjunction Trisomy 21.
- I have found that I am soooooo excited at every milestone Jack meets. Our family celebrates the things we have always taken for granted with our girls.
- This summer, we went to an Angel game with a lot of people from the Buddy Walk in our section. My husband and I LOVED seeing all the different ages with DS. We were fascinated...didn't even watch the game really...just eavesdropped on everyone's conversations, LOL!
- Jack has lots of girlfriends that we frequently get together with for Disneyland or beach days or anything else we can think of.
- Our days are richer because we were blessed with our son Jack, who just so happens to have an extra chromosome. He has changed the hearts and minds of many.
Wednesday, October 10, 2007
Tuesday, October 09, 2007
Research Initiatives from DSRTF...
Current Potential Therapeutic Targets
APP in Down Syndrome
To extend their discovery that the over-expression of the specific APP gene, also known to be encoded on human chromosome 21 and associated with the pathology of Alzheimer's disease, is involved in cognitive impairment in a mouse model for Down syndrome (1), recent DSRTF-funded research by Dr. Mobley and his collaborators is progressing to identify additional specific details involved in this impaired molecular mechanism as well as potential drug compounds that will reduce the level of APP expression. Together with Dr. Steven Chu, a Nobel Laureate in physics, Dr. Mobley and their colleagues very recently developed a novel quantum-dot based technique (2) that may provide an approach to further define the APP-mediated impairment as well as a novel method to identify additional potential drug compounds affecting the process. It should be noted that this very interesting mechanistic linkage between Down syndrome and Alzheimer's disease suggests that not only may individuals with Down syndrome potentially benefit from the on-going specific research and development for new Alzheimer's disease drugs, but that individuals with Alzheimer's disease might also potentially benefit from DSRTF-supported Down syndrome research.
GABA-A mediated Inhibition in the Dentate Gyrus
Building on earlier DSRTF-funded research by Dr. Mobley and his collaborators (3), Dr. Garner and his colleagues published exciting research results in April (4) demonstrating that potential drug compounds which inhibit GABA-A receptors, such as pentylenetetrazole (PTZ), dramatically improve cognitive function in a mouse model of Down syndrome. This DSRTF-supported research has advanced the field another promising step toward realizing an effective treatment to improve cognition in individuals with Down syndrome. Dr. Garner and his collaborators are continuing their research to test and evaluate the potential of these compounds for a new treatment strategy and gain further insight to how they produce effects on cognition. Further, since the trisomic gene(s) involved in the specific cognitive processes studied in this research remain unknown, they have also recently published studies (5) suggesting differences in the hippocampal pathology between two different mouse models of Down syndrome that may help narrow the search for such gene(s).
Exploring New Research Directions
Additional recently published DSRTF-funded research addresses the further definition of specific biological mechanisms underlying the cognitive impairment in Down syndrome. Dr. Dan Madison and his collaborators have discovered specific neuronal circuit abnormalities in a distinct area of the hippocampus, the CA3 region, in the Ts65Dn mouse model of Down syndrome which appear to result in "reduced-complexity networks" and may affect memory functions in Down syndrome (6). Interestingly, subsequent research in Dr. Madison's laboratory revealed parallel results relating to cognitive dysfunction in a mouse model for Fragile X syndrome (7). Dr. Mobley and his colleagues also recently reported research studies analyzing genotype-phenotype relationships involving specific synaptic structural and functional alterations linked to cognitive dysfunction in two different mouse models of Down syndrome (8). Importantly, they also continue an intense pursuit to develop a more comprehensive model interrelating each of the identified dysfunctional mechanisms with cognitive impairment in Down syndrome. These studies are providing critical new experimental information that promises to be helpful in identifying additional potential therapeutic targets.
Inaugural DSRTF Scientific Advisory Board (SAB) Meeting
DSRTF established the SAB as an integral element of the Foundation's proactive research strategy, especially in identifying the most promising ideas and research, advising on research resource allocations, and providing expertise and critical perspective on DSRTF-supported research. The SAB members represent a highly distinguished group of scientists and physicians, with expertise encompassing the fields of Down syndrome research, neuroscience, including Alzheimer's disease research, molecular cell physiology and metabolism, genetics/genomics, and drug discovery. During the inaugural SAB meeting in February there was a lively interactive review of the current DSRTF-supported research considered by all to be constructive and productive, and the SAB concluded there had been exceptional research progress as described above. Based on further vigorous discussions among the SAB members, it is clear there are many additional promising research areas, e.g. postnatal neurogenesis, sleep and metabolic dysfunctions and other specific opportunities, with highly significant potential for an even deeper understanding of cognitive impairment in Down syndrome. Accelerating the discovery and development of new therapies can be effectively achieved through parallel pursuit and support of such an increased diversity of research, and key to realizing this goal will be an expansion of research funding to reach a meaningful critical mass, an increasingly important role for DSRTF. As DSRTF develops and implements new research initiatives based on close consultation with the SAB, we look forward to presenting and sharing the Foundation’s continuing progress in future updates.
Numbered Citations; for web links and additional information, see:
1. Neuron 51, 29 (2006);https://owa016.msoutlookonline.net/owa/redir.aspx?URL=http%3a%2f%2fwww.neuron.org%2fcontent%2farticle%2fabstract%3fuid%3dPIIS0896627306004144; and, http://www.dsrtf.org/dsnews-071806.html
2. Proc Natl Acad Sci U S A 104,13666 (2007); www.pnas.org/cgi/content/abstract/104/34/13666
3. J Neurosci. 24, 8153 (2004); www.jneurosci.org/cgi/content/full/24/37/8153
4. Nat Neurosci.10, 411 (2007); https://owa016.msoutlookonline.net/owa/redir.aspx?URL=http%3a%2f%2fwww.nature.com%2fneuro%2fjournal%2fv10%2fn4%2fabs%2fnn1860.html; and, http://www.dsrtf.org/news-022507.htm
5. Neuroscience Letters 421, 137 ( 2007)
6. J Physiol. 579, 53 (2007); http://jp.physoc.org/cgi/content/abstract/579/1/53
8. J Comp Neurol. 504, 329 (2007); www3.interscience.wiley.com/cgi-bin/abstract/114298666/ABSTRACT
Monday, October 08, 2007
U.S. Secretary of Education Margaret Spellings Delivers Remarks at the
2007 Special Olympics Global Policy Summit in Shanghai
October 3, 2007 Contact: Samara Yudof or Rebecca Neale
Leading a presidential delegation to the 2007 Special Olympics World
Summer Games in Shanghai, China, U.S. Secretary of Education Margaret
Spellings today delivered remarks at the Global Policy Summit on the
Well-Being of People with Intellectual Disabilities. Following are her
Thank you, Andrew Williams, for introducing me. It's an honor to be here with you and so many other athletes and supporters of Special Olympics. I'm also honored to be leading a global delegation of so many talented people from the worlds of sports, academia, and business.
I'd like to thank China for hosting this first-ever Global Policy Summit on the Well-Being of Students with Intellectual Disabilities. It's hard to think of a better setting for this event than the Special Olympics.
This morning, I had the honor of meeting the Team USA athletes, including golfer Jason Plante. In addition to competing here today, he is an honor-roll student, and he also plays on his high school golf team, which is among the best in the state. In Jason's opinion, "there is virtually no difference" between learning a sport and learning in school. He's absolutely right. Both take discipline, focus, practice, and high expectations. This summit is a great opportunity for all of us to work together to help more students around the world succeed and thrive as Jason has.
By celebrating the shared joy and mutual respect that sports can foster, Special Olympics have helped people around the world learn to think more in terms of capability than disability. For example, at the first International Games in 1968, many people thought that swimming pools were dangerous places for people with disabilities. So American Red Cross lifeguards stood shoulder to shoulder around the pool to make sure all of the swimmers were safe. But they never had to jump in. All of the 325 athletes in the pool
were perfectly able swimmers.
I think everyone who was there that day probably learned a valuable lesson-don't underestimate what people with disabilities can do. Unfortunately, when it comes to education, it's taken a long time for people in my country to learn that same lesson. For many years, a lot of well-intended people have done a whole lot of standing by the edge of the pool, worrying whether students with disabilities would sink or swim.
In the late 1960s and early 1970s, when Special Olympics was just getting started, most schools in my country closed their doors to young people like the athletes who are competing here in Shanghai. More than a million children in the U.S. were excluded from school because of their disabilities. In many states, families faced the stark choice of keeping children at home or sending them to institutions. As a result, many children with intellectual disabilities lived far from their families in conditions that no person should have to endure. Today, we're still far from perfect. But my country has seen the kind of progress that all of us should strive for and that all of us can achieve. In the last half-century, we in the United States have shifted our national conversation. Instead of asking whether students with disabilities can learn, we are now talking about how to make sure all students achieve. Not in institutions or special facilities, but in their own neighborhood schools, right alongside their peers.
That's a dramatic change in a very short period of time. And we owe much of this progress to people like Eunice Kennedy Shriver, the founder of Special Olympics, who is a longtime champion for people with disabilities.
Just last week, President Bush signed an executive order to continue and expand the responsibility of the President's Committee for People with Intellectual Disabilities. Mrs. Shriver and her brother, President John F. Kennedy, were driving forces in creating this committee, and I'm proud to be a member today. I'm also honored to have both Mrs. Shriver and her son, Special Olympics CEO Tim Shriver, with me on President Bush's delegation to this year's summer games.
In 1962, an exhausted mother called Mrs. Shriver on the phone. She said she didn't know what to do. No summer camp would accept her child because of his disability. Mrs. Shriver told her, "You come here a month from today. I'll start my own camp. Just like that, she started a free camp right in her own back yard. That camp for 35 kids has grown into this year's largest sporting event in the world: the Special Olympics International Games.
As you've heard, nearly 7,500 athletes are competing here in Shanghai. Together, they represent more than 2.4 million people who participate in 15,000 events year-round, worldwide.
As Tim Shriver says, from its very first days, Special Olympics has sent out the message that people with disabilities "deserve the right to participate and compete, on the playing field and off." Tim, you've clearly been listening to your mom's good advice! I'm sure you also learned a thing or two from growing up with that camp in your back yard. I learned the same lessons from working at the Handy Andy grocery store when I was growing up, where several of my co-workers had intellectual disabilities. We worked hard, we got a lot done, and we had a great time together in the process.
So, how can we work to make sure that people with disabilities can participate and compete in school, just like in Special Olympics? First of all, policymakers and educators like us must take responsibility for educating every single child, instead of picking and choosing. Second, we must think in terms of inclusion-starting with the assumption that students should learn side by side in the same classroom, whether they have disabilities or not. And finally, in addition to including students with disabilities, we must make sure they're learning, too. In other words, it's not OK to tell some kids they can finger paint while everybody else learns how to read.
"In the United States, two landmark laws have helped us put these ideas into action. The first, now known as the Individuals with Disabilities Education Act, or IDEA, was signed into law by President Gerald Ford in 1975. This law guarantees that students with disabilities have access to a free and appropriate public education. It also requires parents and teachers to develop a customized plan to meet the unique needs of every student in special education, which can mean providing help in the form of speech therapy, a classroom aide, or other kinds of assistance." Research shows that when schools separate students with disabilities from learning alongside their peers, their teachers and even their parents are more likely to see them as "more disabled." But when you put everyone together in the same classroom, both teachers and parents are more likely to see students with disabilities as the capable people that they are. Most importantly, the students themselves are more likely to see themselves for the capable people they are and so are their peers. Want to know what else happens when you put everybody together? Students with and without disabilities both do better in school.
In sports terminology, you might say that thanks to IDEA, students with disabilities can get in the game. But as any athlete can tell you, access to the field will only get you so far. To reach your full potential, you need to have high expectations for yourself. And you need people around you who are dedicated to helping you achieve the highest possible goals. We've all seen many examples of that here at the Special Olympics.
When it comes to education, we can put high expectations into action but not only ensuring every child has access to the classroom, but by making sure every student learns. That's what my country's most recent education law is all about. It's called No Child Left Behind. Families of children with disabilities are among the greatest supporters of this law. Why? First off, it requires schools to measure every child's achievement and to publish results for every student group, including students with disabilities. As a result, educators are focusing on these students more than they ever have before. They are also developing better ways to measure student achievement, and better ways to help every child achieve his or her potential. Most importantly, No Child Left Behind is proving that if we raise our expectations, our children will rise to the challenge.
As my mother used to say, nothing sells like success. In other words, once people see one student with a disability who is succeeding in school, they realize that other kids can achieve the same results. In fact, our latest national report card confirms that No Child Left Behind is making a significant difference for children with disabilities. Results released just last week show that between 2000 and 2007, the percentage of U.S. fourth graders with disabilities who have basic math skills doubled, from 30 to 60 percent. That's 140,000 more kids with fundamental skills! In many cases, students with disabilities are outpacing their peers who do not have disabilities.Now that we're making strong progress in K-12 schools, the next frontier is college. Especially now that higher education is becoming more and more essential for everyone in our global knowledge economy. That's why I'm pleased to announce that my department will provide 1.5 million dollars to create a Technical Assistance Center to help colleges and universities develop and expand programs for students with intellectual disabilities. By collecting and sharing information about effective coursework, supports and services, and community
outreach strategies, the center will help more students enjoy a meaningful and rewarding college education.
Just like Special Olympics, we in education must always seek new adventures and challenges for what we can achieve, and for what our children can achieve. Any athlete here will tell you that is the only way to improve. And every competition here proves just how right they are. Over the last few decades, Special Olympics has started to transform the way people around the world think about what people with disabilities can do. Together, we can work to do the same in education.
Sunday, October 07, 2007
Saturday, October 06, 2007
Friday, October 05, 2007
Get it Down: 31 for 21 Day Five
Oh Boy! Does my little man want to go go go!! Our PT gave us this fun little contraption to help Jack practice walking and crawling on all fours instead of his favorite army crawl...of course I turned the camera sideways AGAIN, but the end result is still my oh so cute boy practicing his walking skills!
Thursday, October 04, 2007
Time for a short Bella funny. She has now decided that she does not like boys, only girls...so here's our conversation this morning.
B: I don't like boys...ONLY girls.
Me: What about Jack? Jack's a boy.
B: Yeah, I love Jack...he's not a real boy...he's my brother.
Me: What about Daddy? You don't like daddy. He's a boy.
B: I like Daddy...he's not a real boy either. He's a daddy. I don't like REAL boys mom.
Me: Alllllllrighty then...no boys it is! ;-)
I have to say I'm OK with this!
Wednesday, October 03, 2007
Jack update: 18 months old
Thought I would jot down an update on the happenings of the little man and what we're working on at this point...not too shabby...I'm proud of all he has accomplished...proud proud proud!
Cruising along furniture
Taking off and out
Rolling and throwing balls back and forth (also throwing in frustration ;-))
Cause and Effect with pushing buttons (e.g. doorbell on playhouse)
Starting to watch pieces of a DVD (Signing Time) and attending to it
Putting balls in the holes of his dinosaur toy (HUGE!)
Standing from a squat and standing alone for about a second!
Starting...and I really mean just starting, to self feed
Laughing hysterically at his funny sisters, mommy and daddy
Showing he dislikes something by pushing it away
Words: dada, lala (Bella), dada (baby and he signs with that)
Signs: more, eat, please, thank you, all done, train, apple, ball, baby, I want, milk (baba), happy, elephant, cracker, cookie, book, mama, banana, hi, no (shakes head), hat, blows kisses, hugs, claps, waves hi and bye bye, fish , cheese, orange
Songs he signs with: The Wheels on the Bus, Itsy Bitsy Spider, Five Little Ducks, Twinkle Twinkle Little Star, The Elephant Song, Way up High in the Apple Tree
What we are working on: pincer grasp, pointing, self-feeding with a spoon, drinking through a straw, looking at books appropriately, not throwing everything, LOL!, putting in and on with container play and puzzles, Putting in and actually LETTING GO, crawling on all fours (though his army crawl is SUPER FAST!), watching one DVD and attending to it each day, identifying and distinguishing between two animals, fruits, transportation, and people (boy/girl), standing for longer periods of time, rolling cars
Tuesday, October 02, 2007
Monday, October 01, 2007
Sunday, September 30, 2007
Tricia at Unringing the Bell has come up with a great blogging challenge. Get It Down: 31 for 21 is a challenge to create a blog entry each day of October and incorporate Down Syndrome Awareness. I'm a blogging slacker, so what better way to get me back on track than DS Awareness. I can't say I'll be writing about Down Syndrome every day, but you will see an entry every day. Check out Tricia's site to read other blogs participating in the challenge or even better, you can join in yourself!
Thursday, September 13, 2007
I hope this fall finds you relaxed and in good spirits! We are having a busy time getting ready for our newest Clark addition, Grant! I am writing you today because it is THAT time again! The 2007 Buddy Walk is right around the corner! As you all know, our 17 month old son Jack was diagnosed with Down syndrome at 2 weeks old. He is one of the most amazing children I have ever laid my eyes on (I know, I’m biased! :-)). In his short life, he has profoundly changed the hearts and minds of many with his unforgettable presence, the sparkle in his big brown eyes, and his sweet smile. In recent years, great strides have been made to improve the lives of our kids. This has only happened through years of research, and as a family, we are compelled to help continue this research by supporting the many organizations who have committed to bettering the lives of all people with Down Syndrome.
A wonderful way to help or otherwise become involved in Down syndrome-related charities is participation in the Buddy Walk. The Down Syndrome Association of Orange County (DSAOC) is having their 13th annual "Buddy Walk" at Angel Stadium on Sunday, November 4, 2007. The DSAOC is an organization that is committed to being the leader in enhancing the quality of life, and realizing the potential of all people with Down Syndrome. The Buddy Walk is designed to promote awareness and inclusion for people with Down Syndrome, as well as to raise money to support education, research and advocacy initiatives. Needless to say, it promotes a cause that is close to our hearts.
As stated above, the Orange County Buddy Walk will take place at Angel Stadium in Anaheim on Sunday, November 4, 2007. We will have a team there, “Jammin’ for Jack.” Last year, our team raised almost $8,000.00 and had over 40 people on our team walking for Jack! We hope to surpass both of those numbers this year and hope to get as many people out there raising awareness for Down syndrome and celebrating the life of Jack as possible! Even if you can’t walk long distances (I may be in that boat with you as I’ll be 9 months pregnant!), your presence speaks volumes! You don’t even have to walk…just celebrate with us!
Registration will begin at 9 a.m. with the walk kick-off at 11:00 a.m. The Buddy Walk is about a mile long (strollers and wagons are permitted) and it will be followed with Lunch from 11:30am-12:30pm and Fun on the Field from 10am-2pm. This is a family friendly event! The actual walk is only a small part of this event. If you were there last year, you know how incredible a day it is! I will be MUCH more organized since I know what to expect! We’ll have breakfast and we’ll be there early for a prime spot on the field! ;-)
We would love as many of you as possible to partake -- but we do not mean to pressure anyone and do not want anyone to feel compelled. We recognize how busy everyone is, however, we just wanted to let you all know about the event and thought it might be a great opportunity to get together with some family and friends. We are committed to raising awareness about Down syndrome as well as educating folks that a complete and happy life is possible for people with disabilities. Last year, nationwide, the Buddy Walk raised over $5 million dollars. We hope to help this year by raising at least $10,000.00 as a team. If you cannot walk, please consider making a donation to our team. Each donation is a tax-deduction and you will be supporting a great cause. We have enclosed a self-addressed stamped envelope for your convenience if you would like to make a donation or join the team. All checks should be made out to: DSAOC, OR if you would like to donate online go to the following link: http://buddywalk.kintera.org/dsaoc/jackclark (for individual donations) OR http://buddywalk.kintera.org/dsaoc/jamminforjack (to join the team)
Please let us know if you intend to participate and please pass this note along to anyone who might be interested or to anyone that I might have omitted.
Hoping to see you all on the 4th. Thank you in advance for your support and generosity.
With warmest regards,
John, Kristin, Keeley, Bella, and Jack (and soon to be Grant) Clark
Wednesday, September 05, 2007
Friday, August 17, 2007
I've been tagged by Stephanie over at Megan's Got 47...the task: three things I am grateful for. It took me all day yesterday to narrow this down to only three as I am grateful for so much, but here goes...
1. Yesterday was my 4th wedding anniversary, so I think it is fitting to say I am grateful for my husband John. I really found a good one in that one I tell ya! I could go on and on about him, but really, he is a wonderful provider for our family, works his a$$ off every day so that I can stay home 90% of the time with our kids, and he's an amazing father who adores his children with everything he has. As for me, I am grateful for my kiss goodbye every morning and my kiss hello the second he enters the door...I am grateful that I hear the words "I love you" every day. It may seem little, but that kiss in the morning is enough to put a smile on my face all day...for that I am grateful.
2. Yesterday was also Jack's closing ceremonies for the summer program at ICEC. They had an "Olympics" theme with gold medals (Jack's was for gymnastics...boy that kid likes to move!), pretend fireworks, a torch parade, and T-shirts...it was adorable! This leads me t number two. I am so grateful for Jack's therapists: Donna, our in home PT, is an absolute Godsend...we just love everything she does for Jack, and I don't know what I would do without her. I'm also grateful for all of the therapists and staff at ICEC; Letty, Rondele, Rachael, Lisa, Celeste, Amy, Jeannie, Kathie, Pam, Lupe...for all of their knowledge and care for our children, I am grateful.
One of Jack's Many Girlfriends...One of the sweetest angels ever, Miss Macy
It is now my turn to tag three people...so Bethany over at "Life with Bubba and Chicky," my girl Shelbie at "Maddi's Site," and Renee at "The Parker Family," you're it!
Sunday, August 12, 2007
Wednesday, August 08, 2007
Monday, August 06, 2007
Saturday, August 04, 2007
Edited to add: He just added please and happy to his signs. :-)