Happy Birthday my beautiful boy. Thank you for coming into our lives and for helping to throw stereotypes right out the window. You've changed everyone who's met you for the better and continue to do so every single day. Have you even gone one day without hearing how cute you are? You make us prouder than words will ever begin to describe. Thank you for cleaning up after yourself now, and for making us laugh so hard all the time. Lyla thinks you are the best brother anyone could ever have and as you know, always wants to show you off to all of her friends who are all in love with you. You have the sweetest laugh, voice and smile. It's ok that you don't like to listen all of the time and that you are often up to no good, that's what most kids do. You're one of the smartest kids I've ever met and it's ok that your smarts are saved and shown to those closest to you! We know that you leave the best for us. I know I speak for everyone who knows you when I say, "We Love You Jaden!"
Love, Mommy
P.S. Who knew you would turn into such a huge Ham. Boy do you love the camera and the camera sure does love you. Thank you for always letting me teach you special little tricks and for being such a willing participant and performer. Remember when you would imitate me singing when you were only a few months old? It was then that I knew you were a natural. You make everyone laugh so loud. Especially yourself, right?
You may want to turn down the volume a bit on this one. Jaden gets pretty excited when he sees himself on camera. We wish all of you a wonderful Holiday and hope this coming year greets you with happiness and health!
It's been a while, but for good reason. I just got done opening up a store (5th one) and am deep in the throws of marketing and promoting. It's been about 5 years since my last store and I am so excited to be back in the mix again. This time though, I have a partner and it is making such a huge difference. Anyway, so much to update with Jaden.
We've been teaching him sign language again, because it seems to really help him with his speech. Jaden has always been a great talker and about 2 years ago, we started teaching him signs. But, we found that because he was picking up the signs so easily, we were afraid he wouldn't go on to say the words because enunciating words was much more difficult for him at the time. I told his speech therapist at the time about how quickly he was picking up on the signs, and he seemed to learn faster than anything else we had teached him. She suggested holding off on the signs until he could get his speech enunciation better. So, we did. Well, I started doing the signs again with Jaden about a month ago because now he is speaking in 3 and 4 words clearly and also speaking in sentences (not always so clearly). So we do a sign, say the word and make him do the same. What a difference 2 years makes! He is amazing at the signs, and not only learns and remembers up to 10 new signs a day, he loves doing them. He gets so excited to show you the signs and say the words. It only took him about 4 days to learn the whole alphabet and all of the other signs are a piece of cake for him. It must be the combination of doing, saying and acting out the words that really reinforces everything for him.
So, if you're like me and are waiting for sign language, I can only say this. Don't wait! I wish I hadn't stopped 2 years ago. I can't even imagine how much more advanced his vocabulary may have been had we kept going with the sign language. Plus, the whole family loves doing it! Everyone gets involved and it's very fun. Here's a video of him doing a few signs.
All Paren't Should Read About This Bill
Posted by L. Noelle Labels: patricia bauer, petition, prenatal actCongress OKs Kennedy-Brownback disability diagnosis bill
September 25th, 2008
The House has joined the Senate in passing a measure that disability rights advocates hope will fundamentally change the conversations that are taking place between pregnant American women and their doctors. Passed on a voice vote on Thursday, the bill would provide for accurate, up-to-date information and support for parents who receive a diagnosis of Down syndrome or other disabilities such as spina bifida or cystic fibrosis either prenatally or up to a year after the birth of their child. President Bush is expected to sign it.
Passage of the measure marks the culmination of an unprecedented bipartisan effort that has joined supporters of abortion rights, led by co-sponsor Sen. Edward M. Kennedy (D-Mass.), with opponents of abortion, led by co-sponsor Sen. Sam Brownback, and disability rights advocacy groups. Kennedy is also a longtime advocate for people with disabilities. While members of this loose coalition may have profound disagreements about what may be acceptable at the end of a pregnancy, they came together around another key question in prenatal care: What kind of information and support should be available to pregnant women if initial testing reveals the presence of a disability?
The question has become more urgent in recent years as more women are postponing childbearing, putting them at a greater risk of having pregnancies marked by genetic and other abnormalities, and as the offer of prenatal testing has become standard care. It is estimated that more than 1,000 prenatal tests are available or in development. Included among them are tests for conditions that are not life-threatening, could be helped by surgery or medical care, or don’t appear until adulthood. The prognoses for people with some prenatally diagnosable disabilities have been improving markedly in recent years, leaving medical professionals scrambling to keep up with changing data.
Down syndrome has led the way in the public conversation about prenatal testing and selective abortion because tests to detect the condition were among the first to be developed, and came into use at about the same time the landmark Roe v. Wade case opened the doors to legal abortion in 1973. Yet medical, social and educational changes have dramatically improved the prospects for people with Down syndrome over the same time period.
The Prenatally and Postnatally Diagnosed Conditions Awareness Act is framed as a bill to strengthen the informed consent process around prenatal testing. It provides for families to receive scientifically sound information about the nature of the condition involved, as well as to help them make connections with support services, websites, hotlines and parent networks. The bill also provides for the development of a national clearinghouse of information for parents of children with disabilities, expansion of peer-support programs, the development of a national registry of families wishing to adopt children with disabilities, and education programs for health care providers who give parents the results of prenatal tests. The measure has a price tag of $25 million over five years.
Speaking on the House floor, Rep. Cathy McMorris Rodgers (R-Washington) described herself as the “proud mother of an amazing baby boy,” one-year-old Cole who has Down syndrome. She portrayed the bill as a disability advocacy measure, calling it “a positive step forward in helping new and expecting parents of children with special needs get accurate information on the real potential of their children.” McMorris Rodgers cited a study by pollster Louis Harris and Associates that found that medical professionals are more likely than any other group to underestimate the quality of life experienced by people with disabilities. In an interview after the vote, McMorris Rodgers said she and her husband Brian received Cole’s Down syndrome diagnosis from a medical team that reviewed a long list of “what might go wrong” with her son, but neglected to acknowledge his possibilities. “There’s so much potential that a child with Down syndrome has,” she said, “and we really fail to articulate that side.”
Opponents of abortion have painted the measure as a pro-life bill. In floor testimony, Rep. Tim Ryan (D-Ohio) said it would reduce abortions by telling prospective parents of children with disabilities that “society will be there to support you. We will bring every resource to bear to ensure that you are able to raise a beautiful baby. Never should a pregnant woman feel that her options are limited by a lack of public support for the types of social services that could help her, her family or her baby.” With current statistics saying that 90 percent of pregnancies with a diagnosis of Down syndrome are aborted, Ryan said that number could be reduced if women were given the support they need and deserve.
Sen. Brownback was even more pointed in remarks in support of the bill on the Senate floor last week. “What we’re trying to do with this bill is to see that more Down syndrome children make it here and get here,” he said, standing in front of a large photograph of Republican vice presidential candidate Sarah Palin and her son Trig, who has Down syndrome. “We’re ready to move forward on this so we can get more of these special kids here.”
Approval of the bill came more than three years after an earlier version was introduced, spurred in part by research that found mothers of children with Down syndrome were sharply critical of the paucity of information they were receiving about their child’s diagnosis from medical professionals. A study by Dr. Brian Skotko in the American Journal of Obstetrics and Gynecology said mothers who received a prenatal diagnosis said obstetricians and genetic counselors gave them scant information that was often out of date and unduly pessimistic. Another study in the journal Pediatrics, also by Dr. Skotko, found similar results among women who had received the diagnosis after their children were born.
It is currently estimated that some 400,000 Americans have Down syndrome, a genetic condition that causes a range of physical and intellectual disabilities. The range and extent of impairment can’t be accurately predicted prenatally. While the bill has been making its way through Congress, the development of prenatal tests has been causing excitement among investors who say the market for accurate testing tools has multi-billion dollar potential. Just this week, the stock of California-based Sequenom Inc. has jumped more than 30 percent on an announcement that it had conducted a successful study of a new prenatal test. Sequenom reported that its SEQureDx test detected Down syndrome accurately in the first and second trimester of pregnancy in about 200 samples with no false positives or false negatives, matching earlier data from another 200 samples.
Until a few years ago, prenatal testing was routinely offered only to women aged 35 and over because it was thought that at that age a woman’s risk of having a child with Down syndrome was roughly equal to her risk of having a miscarriage caused by a prenatal test. Recently, however, the American College of Obstetricians and Gynecologists (ACOG) has issued new recommendations that all pregnant women regardless of age be offered prenatal screening and testing.
Not specifically addressed by this bill is the question of how doctors are themselves being educated about the conditions they may discover through prenatal diagnosis. A recent study published in the American Journal of Obstetrics and Gynecology found that 45 percent of obstetricians and gynecologists rated their residency training regarding prenatal diagnosis to be “barely adequate” or “nonexistent.” Another study, this one conducted by Special Olympics, found that 81 percent of medical school students said they were not getting any clinical training regarding individuals with intellectual disabilities.
An earlier version of the measure, which attempted to establish requirements for doctors to provide accurate information about disabilities to their patients and set penalties for those who failed to comply, met with opposition from medical professionals. There were concerns that political pressures might intrude upon the doctor-patient relationship.
Congressional offices reported getting a flurry of last-minute phone calls from disability advocates organized by groups including the National Down Syndrome Society, National Down Syndrome Congress, Trisomy 18 Foundation and the University Centers for Excellence in Developmental Disabilities.
For Madeleine Will, director of the Policy Center of the National Down Syndrome Society, the bill’s passage marked an emotional moment. “I am thrilled beyond measure,” she said, adding that she hoped it will prompt a shift in the way the nation regards people with disabilities.
“Through providing accurate, updated information about disabilities like Down syndrome to pregnant women, the hope is that they will make a better, more informed decision,” she said. “But the bigger impact will be better understanding on the part of the American people about the nature of disability and the value of these citizens to their families, their communities and to our country.”
OMG! The Bill Finally Passed! Thank you for everyone that signed my Petition! It helped so much along with the thousands of other tireless Mom's, Activists, Parents, Friends and Families along the way! What a victory for our cause! Maybe now parents can get the fair, accurate information and support they deserve prenatally and postnatally! Whoo Hoo!
The Down Syndrome Community Celebrates an Important Victory
Congress Passes the Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act
New York, NY (September 26, 2008). After three years of advocacy, the U.S. Senate and the U.S. House of Representatives passed S. 1810, the Prenatally and Postnatally Diagnosis Conditions Awareness Act, during this last week before Congress adjourns . The legislation has been an extremely high priority for the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC). These organizations and individuals with Down syndrome and their families across the country are convinced there is a need for physicians and other health professionals to provide parents who receive a prenatal or postnatal diagnosis with updated, evidenced-based information about Down syndrome.
U.S. Senators Edward Kennedy (D-MA) and Sam Brownback (R-KS), original co-sponsors of the bill, came together to pass S. 1810. The bill passed the Senate by unanimous consent on September 23rd and passed the House by a voice vote on September 25th.
The Prenatally and Postnatally Diagnosed Conditions Awareness Act ensures that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will be more likely to receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options . It offers referrals to support services such as hotlines, Web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. The information that is all too often being provided in these situations is out-dated and inaccurate. The treatment options, functional development, opportunities and accomplishments of individuals with Down syndrome have improved dramatically over the years, yet decades old stereotypes still persist. It is critically important for healthcare professionals, families and society to update their knowledge and their perceptions about individuals with Down syndrome.
NDSS, NDSC and affiliate groups across the country, have worked for almost three years to bring the bill to passage. J. David Hoppe, NDSS Governmental Affairs Committee Chair, worked tirelessly with Members of Congress to ensure the bill would be considered despite competing time demands in Congress. “With one small eight-page statute we have the power to brighten the future for people with Down syndrome and their families, by breaking stereotypes and dispelling myths”, states Hoppe.
NDSC and NDSS and appreciate the hard work of the Members of Congress who championed the bill in the Senate and the House of Representatives—Senators Edward Kennedy and Sam Brownback, Congressmen James Sensenbrenner and Tim Ryan.
Other members of Congress who provided invaluable assistance and support- Senator Harry Reid, Speaker Nancy Pelosi, Majority Leader Steny Hoyer, Senator Mitch McConnell, Congressman James Clyburn, Minority Leader John Boehner, Congressman Roy Blunt, Congressman John Dingell, Congressman Joe Barton, Senator Jon Kyl, Congressman Pete Sessions and Congresswoman Cathy McMorris Rodgers.
NDSS and NDSC would like to thank the members of the Trisomy 18 Foundation and their leadership who were diligent and stalwart supporters in the effort to pass the bill.
NDSC and NDSS would also like to thank their affiliates and the thousands of individuals with Down syndrome, parents, families and friends who have worked tirelessly during the three-year effort to pass the legislation.
Help Pass The Prenatally & Postnatally Diagnosed Condition Act!
Posted by L. Noelle Labels: legislation, petition
Taken Straight From The Press Release! Please read below. We are all disgusted with the current Prenatal & Postnatal diagnosis procedures. Over 80% of New and Expecting parents are horrified with the lack of support or information regarding the a diagnosis of their new or unborn baby. Most of the time the only suggestion is, termination. There is rarely any counseling, support or updated information given to parents! This has to stop, and this Bill can help stop eugenics from being played out by Dr's to the degree that it is. This is why I wrote my Petition! Well the Bill has finally after 3 years, passed the Senate! Help it pass! Make a phone call! Just read below at what you can do to help!
URGENT ACTION NEEDED IN THE HOUSE OF REPRESENTATIVES
Take Action!
Pre-Natal Screening Bill Passes Senate
TO: NDSC & NDSS Members and Affiliated Parent Groups
FROM: Susan Goodman, Director Governmental Affairs, NDSC; Madeleine Will, Vice-President, NDSS Policy Center
DATE: September 24, 2008
URGENT ACTION NEEDED IN THE HOUSE OF REPRESENTATIVES
Pre-Natal Screening Bill Passes Senate
Call Congresswoman Pelosi (D.CA) and Congressman Hoyer (D.MD)
Yesterday, September 23, 2008 the Senate passed the Prenatally and Postnatally Diagnosed Conditions Awareness Act, (S. 1810) known as the Kennedy-Brownback bill. Immediate action is needed in the House of Representatives to pass this proposed legislation during this session of Congress.
Call Congresswoman Nancy Pelosi, Speaker, House of Representatives, 202-225-0100 and Congressman Steny Hoyer, Majority Leader, House of Representatives, 202-225-3130, with the following message:
Please take up and pass the Prenatally and Postnatally Diagnosed Conditions Awareness Act, S. 1810, under unanimous consent or suspension of the rules by the end of the week.
We will keep you posted as events unfold and as further action is needed.
If you have questions, please contact Susan Goodman at susang1961@aol.com or Madeleine Will at mwill@ndss.org.
Please read about this organization and do everything you can to pass on the word. There can never be too much awareness brought to this subject. A woman named
Chessia Kelley runs this phenomenal organization. Please read about it below.
My organization, International Medical Corps, was nominated to be one of the Top 25 in American Express' Members Projects, "Saving the Lives of Malnourished Children." Our project was chosen out of 1,190 projects and is now eligible to receive up to $1.5 million to help feed hungry children, but the voting ends next Tuesday and we need your help to spread the word. I've put together this blogger friendly web release explaining everything.
http://
New Study Proves Effectiveness Of Supplementation With Down Syndrome
Posted by L. Noelle Labels: down syndrome, supplementation
- There are many important studies going on in Universities across the country testing the effectiveness of supplementation and Down Syndrome. Study after study seems to keep showing the same results. That people with Down Syndrome can benefit tremendously from supplementation both with their immune systems and in their overall development.
Serum cholinesterases in Down syndrome children before and after nutritional supplementation.
Institute of Genetics & Hospital for Genetic Diseases, Osmania University, Begumpet, Hyderabad 500016, Andhra Pradesh, India.
INTRODUCTION: Down syndrome (DS) children have different degrees of developmental abnormalities associated with mental retardation. A cascade of pathological changes triggering alterations in cholinesterase-mediated functions seems to be the cause of neuronal and muscular dysfunctions, such as memory loss, disturbed cognitive skills, and language impairment in virtually all DS individuals, but there are currently no efficacious biomedical treatments for these central nervous system-associated impairments. The present study aimed to evaluate the effects of nutritional supplementation on cholinesterases in serum of DS children. METHODS: Activities of acetyl- and butyrylcholinesterase were analysed in the serum samples of 40 DS children, along with an equal number of age- and sex-matched controls under study. RESULTS: The activities of serum acetyl- and butyrylcholinesterase were found to be low in DS children before nutritional supplementation, compared to controls, and showed considerable improvement after six months of supplementation of zinc in combination with antioxidant vitamins and minerals. A significant improvement was also observed in cognitive skills and behavioural patterns after nutritional supplementation. CONCLUSION: The present pilot study suggests the significance of early intervention with nutritional supplementation in DS children to ameliorate the severity of this disorder.
PMID: 18695865 [PubMed - in process]
Don't Give Your Daugthers The HPV Vaccine!
Posted by L. Noelle Labels: hpv vaccine, merck, mike adams, natural news
I subscribe to Natural News, by Mike Adams, the self appointed "Health Ranger". He is truly an advocate for environmental issues and natural products, holistic cures and the like. He puts out an extremely informative news letter and one of the issues he is passionate about, is one of the biggest money making scams of our generation. The over-vaccination of our children and the governemnt making money from the pharmaceutical companies rallying mandated vaccines for everyone.
This is an issue I feel passionately about and have researched hundreds and hundreds of hours of material pertaining to vaccines. The most worthless, biggest money maker so far, is the HPV vaccine, proving to be one of the most un-necessary, dangerous and deadly of all vaccines ever introduced. I would never, ever, ever give my own daughter this needless, fraudulent vaccine and I hope you read everything you can about this! Read about Merck and the powerful lobbying efforts they deploy to get vaccines mandated!
http://www.naturalnews.com/report_HPV_Vaccine_0.html
Gluten-Free Giveaway on MyHealthiestLife.Com
Posted by L. Noelle Labels: FREE products, gluten free, my healthiest life
This week, we are giving away 24 boxes of my absolute personal favorite gluten-free crackers! Mary's Gone Crackers, a fantastic Gluten-Free company is excited to introduce you to 4 different gluten-free products that they offer. These crackers are made with the most fantastic ingredients including whole grain brown rice, organic quinoa (keen-wa: a high protein seed/grain), organic flax seeds and organic brown sesame seeds, with no added fat. Trust me when I say, these crackers are delicious!
You can win 1 of 24 boxes of either the Original or Herb Cracker or their newest product, Sticks & Twigs in Chioptle Tomato or Sea Salt. Wait till you try these they are Fabulous!
"Protein Linked With Down Syndrome May Help Treat Breast Cancer"
Posted by L. Noelle Labels: breast cancer, down syndrome, protein, researchSomething I read a while back which I've read before. Very interesting, indeed.
Washington, Feb 5: 
Researchers at the Texas A&M University College of Veterinary Medicine & Biomedical Sciences have found that a protein long suspected to play a role in Down Syndrome might also contribute to treating breast cancer.
It is already known that Down Syndrome is caused when an individual has an extra copy of the 21st chromosome, giving them a total of three instead of the normal chromosome pair.
And now with advancements in medical care, people with Down Syndrome are living longer and healthier lives.
Along with this improvement came the observation that individuals with Down Syndrome have a significant decrease in risk for several types of tumours.
The most surprising observation is that women with Down Syndrome are 10-25 times less likely to develop breast cancer.
Scientists believe that this effect is due to the presence of one or more ‘tumour suppressor’ genes on chromosome 21. However, the identity of such genes has not been known, until now.
“Years of research into the genetics of Down Syndrome have helped us to discover a very important gene on chromosome 21,” said Dr. Weston Porter, associate professor in the Veterinary Integrative Biosciences Department.
“This gene, called Single-minded 2 or SIM2 is thought to play an important role in Down Syndrome by regulating neuron growth in the developing brain. Based on its developmental role, we hypothesized that SIM2 may also be involved in breast cancer, which is essentially a disease of uncontrolled growth,” he added.
For past five years, Porter and his colleagues have been using human breast cells and mouse models to validate this hypothesis, and what they have found they consider it very promising.
SIM2 is lost or suppressed in a majority of human breast tumours, and if the gene is deleted, it triggers rapid tumour growth in mice.
However, the process by which SIM2 suppresses breast cancer is complex and not fully understood.
This same protein, which might hold so much promise for breast cancer treatment, is also thought to contribute to the negative effects of Down Syndrome.
“As we move forward, it will be important for us to understand the circuit of SIM2 and how it is turned on and off. In light of the available data on breast cancer incidence in the Down Syndrome population and our experimental data, knowing how to turn SIM2 expression on and off and identification of down-stream targets should have great therapeutic value,” Porter said.
Although the study is in its early stages, it still represents a promising weapon in the fight against breast cancer as it sheds light on a previously unknown target for which to shoot.
The study is published in the journals Molecular and Cellular Biology and Carcinogenesis. (ANI)
Typical picture above from what you may find when searching under 'Down Syndrome'. P.S. Jaden doesn't have a simian crease and I believe roughly 40% of our kids don't.
I've read many articles over the last 3-1/2 years relating to Down Syndrome. Some are written with sensitivity, understanding and accurate in-depth reporting. Others are written using regurgitated information received from burnt out, pessimistic genetic 'counselors' (an oxymoron), Doctors and Medical staff.
This article I just read in the Star Tribune, Minneapolis, belongs in the first category. If you have a minute, you should read it.
A mainstream moment for Down syndrome
WASHINGTON – In addition to Barack Obama making history as the first African-American to be nominated for president and Sarah Palin taking her shotgun to the glass ceiling, there was a third civil-rights barrier broken at the political conventions this year.
Trig Paxson Van Palin — pronounced by his mother "beautiful" and "perfect" and applauded at center stage of the Republican convention — smashed the chromosomal barrier. And it was all the more moving for the innocence and indifference of this 4-month-old civil-rights leader.
It was not always this way. When John F. Kennedy’s younger sister Rosemary was born mentally disabled in 1918, it was treated as a family secret. For decades Rosemary was hidden as a "childhood victim of spinal meningitis." Joseph Kennedy subjected his daughter to a destructive lobotomy at age 23. It was the remarkable Eunice Kennedy Shriver who talked openly of her sister’s condition in 1962 and went on to found the Special Olympics as a summer camp in her back yard — part of a great social movement of compassion and inclusion.
Trig’s moment in the spotlight is a milestone of that movement. But it comes at a paradoxical time. Unlike with African-Americans and women, civil-rights protections for people with Down syndrome have rapidly eroded over the last few decades. Of the cases of Down syndrome diagnosed by prenatal testing each year, about 90 percent are eliminated by abortion. Last year the American College of Obstetricians and Gynecologists recommended universal, early testing for Down syndrome — not just for older pregnant women. Some expect this increased screening to reduce the number of Down syndrome births far lower than the 5,500 we see today, perhaps to fewer than 1,000.
The wrenching diagnosis of 47 chromosomes must seem to parents like the end of a dream instead of the beginning of a life. But children born with Down syndrome — who learn slowly but love deeply — are generally not experienced by their parents as a curse but as a complex blessing. And when allowed to survive, men and women with an extra chromosome experience themselves as people with abilities, limits and rights. Yet when Down syndrome is detected through testing, many parents report that genetic counselors and physicians emphasize the difficulties of raising a disabled child and urge abortion.
This is properly called eugenic abortion — the ending of "imperfect" lives to remove the social, economic and emotional costs of their existence. And this practice cannot be separated from the broader social treatment of the disabled. When we eliminate less-perfect humans, deformity and disability become more pronounced and less acceptable. Those who escape the net of screening are often viewed as mistakes or burdens. A tragic choice becomes a presumption — "Didn’t you get an amnio?" — and then a prejudice. And this feeds a social Darwinism in which the stronger are regarded as better, the dependent are viewed as less valuable, and the weak must occasionally be culled.
The protest against these trends has come in interesting forms. Last year, prochoice Sen. Edward Kennedy joined with prolife Sen. Sam Brownback to propose a bill that would have required medical professionals to tell expectant parents that genetic tests are sometimes inaccurate and to give them up-to-date information on the quality of life that people with Down syndrome can enjoy. The bill did not pass, but it was a principled gesture from Rosemary’s brother.
Yet the prochoice radicalism held by Kennedy and many others — the absolute elevation of individual autonomy over the rights of the weak — has enabled the new eugenics. It has also created a moral conflict at the heart of the Democratic Party. If traditional Democratic ideology means anything, it is that America is a single moral community that includes everyone. How can this vision possibly be reconciled with the elimination of Down syndrome children from American society? Are prochoice Democrats really comfortable with this choice?
The family struggles of political leaders can be morally instructive. Contrast the attitude of Joseph Kennedy with that of Charles de Gaulle, who treated his daughter Anne, born with Down syndrome in 1928, with great affection. The image of this arrogant officer rocking Anne in his arms at night speaks across the years. After her death and burial at the age of 20, de Gaulle turned to his wife and said, "Come. Now she is like the others."
And now we have met Trig, who is just like the others, in every way that matters.
Michael Gerson’s column is distributed by the Washington Post Writers Group.
Did you see this last night? I missed it, but watched the below footage. What do you think of this piece. Just one more piece saying what we, as parents, already know. There is still a total lack of support and encouragement prentally. It continues every day in Dr's offices and hospitals across the United States. I just spoke with a mom yesterday who relayed another negative postnatal experience with no support being offered after her son was born. I wonder when this will stop? When will we have enough of this?
Here's the piece as it was shown.
Watch CBS Videos Online
Here's the additional footage that wasn't shown.
Watch CBS Videos Online
So, in re-doing all of my websites and blogs, I have realized that one of the best projects I ever started, was sitting, unattended and ignored.
Video Stories For Expecting Parents, is a blog I started about 18 months ago with one intention, to offer positive reassurance and hope for any new parents out there who may have just received a prenatal or postnatal diagnosis. We all know, once we've gotten to know and love our children just how deep and profound our love is. But to be on the other side, the side that is looking for hope, encouragement and any sign that your unborn or new born baby will be ok, well, it's scary to say the least. All you need to do is go to my petition and click on the 'signatures' and start reading all of the different stories. You quickly see that so many parents, every day are still left with doubt, fear and guilt wondering if they should even be bringing a potentially 'disabled' baby into the world. This thinking is brought on by the prenatal medical community, parenting magazines and pregnancy magazines which all fail to support the special needs community at all. For this is a community so large, so vast and so proud that our voices really need to be heard!
I have received dozens of phone calls over the years from parents who have just received a diagnosis, still scared and unsure, just wanting to hear everything is ok. You always wish, at that moment, that you can reach through the phone, hold the person's hand and let them inside your heart and head for just a moment. They will then have no doubt of their ability to love unconditionally their unborn or new born baby. It's something you realize once you get to the 'other side'. If you have a video of your child that you want to share, or know someone with one, please email me a link to the video and I'll upload it to the site! More videos are needed! Check it out, but have some tissues handy!
As always, I love hearing from you! I read every single email! If you want a response back, include your email when you leave a comment on the blog.
Sometimes I get emotional when I think about what Jaden means to me. It's so profound trying to explain to other's as I often spend time doing, just how enormously special he is to me. Of course all of our children are precious to us. It's just that my love for Jaden is different. It's a love I want to explain to everyone I meet and to whomever meets him. If I have to break down stereotypes every single day for the rest of my life, I'm up for the task. Hearing Sarah Palin's speech a few nights ago, I was brought to tears. Not because she has a son with Down Syndrome. But because finally, someone on a National Platform could ever so slightly touch on the subject for a second of Down Syndrome and Special Needs. This is a community that needs a large voice and never has there been a greater need. So, thank you Sarah Palin for being that voice and for telling the world what we already know, that your son is "perfect" and that you are grateful to have him. I thank God every day for giving me Jaden just the way he is. For letting me learn, in this life time, lessons I never dreamed I needed to learn. Thank you God, for Jaden. I tell people every day, that Jaden is perfection personified. Just as we all are.
Yesterday, picking up Jaden and Lyla from school, Lyla said, "Mom, some of the girls were telling me that a few kids were making fun of Jaden."
I said, "Lyla, if you ever hear anyone making fun of Jaden, tell them one thing, he's no more different than they are. Everybody has something that makes them different, it's just some things are easier for some people to hide. But everyone has something different, everyone! Remember, God is fair and equal when handing out differences." She said, ok, I'll say that. :)
Food Intolerances & Down Syndrome
Posted by L. Noelle Labels: down syndrome, food intolerance, gluten free
Nutrition and prevention are topics close to my heart. I, like most of you reading, have a child with Down Syndrome and have sped up my studying of nutrition and health even more because of this. Some areas of nutrition and prevention are becoming more familiar to traditional health professionals, however most traditional Dr's are still vastly under-educated when it comes to healing and prevention.
The very nature of Down Syndrome makes the immune system more susceptible to viruses and bacteria. Simple things the "typical" immune system may be able to fight off can become more prominent issues in Down Syndrome. Of this, most parents are aware. But, and this is a huge but, there are many, many things that can be done to create as normal an immune system as possible much to many Dr's surprise. As we all know, there are many variables in Down Syndrome and the degrees of difficulties vary tremendously. Some parents can talk about how perfectly healthy their child with Down Syndrome is, yet for others they have never ending health issues with their child. For most parent's their child falls somewhere in the middle. I wanted to write this because everything I have been studying and learning over the last several years points to several known facts.
1. Most people with Down Syndrome have cow milk protein intolerance.
2. Most people with Down Syndrome have varying degrees of gluten intolerance.
3. Most people with Down Syndrome have a hard time metabolizing sugars.
4. Most people with Down Syndrome have Mal absorption issues with foods.
5. Most people with Down Syndrome can avoid MOST health issues if they follow certain dietary guidelines.
6. Most people with Down Syndrome can have near normal metabolisms and avoid most weight issues if they follow certain dietary guidelines and exercise.
In case you are reading this and already know all of these things, I applaud you and would love to hear what you are doing and all about your personal experiences making certain changes in the diet. However, if you are reading this and don't know most of this, I will share more information.
Roughly 80% of the immune system is located in the digestive tract. 80%! This is very important to know, and something that even the health community wasn't so aware of until recently. This should be taught to all of our children early on in school. Because most of the immune system is in the digestive tract, it makes perfect sense that every single thing we eat affects our immune system. Until recently, health professionals usually ruled out "food allergies" if the patient didn't show obvious signs of digestive distress. However what they are now realizing is that most people manifest food intolerance's in many different ways. When someone is having constant sinus issues, or eczema, or asthma or headaches, these are all major signs of food intolerance's. Symptoms such as bloating, water retention, sleepiness, moodiness, etc. are also signs of food intolerances. People may have varying degrees of different symptoms, yet they can all share the same food intolerances.
There isn't total proof that all people with Down Syndrome are gluten intolerant, however there is more and more evidence leading researchers to study the different types of gluten intolerance. This is one of the most descriptive articles summarizing how different food intolerance's work. Please read this for more detailed information.
We have had Jaden on a gluten free, dairy free, sugar free diet for the last year and a half. All I know is that Jaden hasn't had one cold or runny nose in this time. Before we had him on this diet, he would get a runny nose every few months. We also notice that if we slack off with the diet, he almost immediately gets congested, especially if we do it for several days straight like we have when we're traveling and we get lazy. If you want more information on this subject, just email me!
Ginkgo Biloba & Nutritional Intervention
Posted by L. Noelle Labels: down syndrome, ginkgo biloba, nutritional interventionThere is a documentary coming out about a woman I have come to know over the last few years. As part of this very special community of parents, Teresa Cashion is definitely someone who has taken her role as advocate and mom very seriously. I was lucky enough to be introduced to her through the Internet on one of my Yahoo groups, DSTNI. This is a group devoted to discussing different natural therapies and nutritional intervention. We've been completely in support of Nutritional Intervention and have had Jaden on supplementation since he was 3 months old. After reading a little about Ginkgo Biloba and its extraordinary effects it has on the memory and for its ability to increase blood flow in the brain, I was more and more intrigued by it's ability to help in Down Syndrome. After all, much of what many top Researchers from Universities across the country are realizing is: If we can help prevent the neurons from dying off in the brain, and at the same time increase blood flow to the region of the brain that is most severely affected in Down Syndrome, they hypocampus, then we could possibly allow for more typical brain development. The studies being done at Stanford Univeristy right now are extremely promising and all point to this hypothesis being correct. Just how to treat the brain, is something that still needs to be completely realized.
In the mean time, parents like me, aren't waiting for all of the trials and medications to be completed and tested. Teresa Cashion, a Dentist from Houston Texas decided to start giving her son Ginkgo Biloba along with different supplementation to see if it could in fact help her son. In her own words, she was completely amazed at the almost immediate results after starting him on Ginkgo. After speaking with her for an extended period of time and her informing me that many other parents were having fantastic results with their own children, I decided to start giving Ginkgo Biloba to Jaden at 16 months of age. After researching Ginkgo Biloba and realizing that the formula I was going to give him had to be regulated, pure and from a reputable company, I was excited to start Jaden on this. Since I research nutritional supplements avidly anyway, I was able to trust the brand I chose. Nature's Way, GinkgGold.
Within the first few hours of giving Jaden his first dosage of Ginkgo Biloba, we noticed immediate changes in his response time. No longer was there a slight delay when calling his name and waiting for a response. It was as if a light bulb went off in his head, and things started to click much faster for him. From that day on Jaden has been on Ginkgo Biloba. We give him 60mg a day, we crush a tablet and put it in some applesauce or soy yogurt. We also give him a multi vitamin supplement every day as well. Many parents also give extra fish oil and other supplements, but as of now we are only giving Jaden these 2 things.
The consistent things we hear almost daily from people who meet Jaden since he was born is, "He doesn't seem like he has Down Syndrome." or other's ask "He's so smart, so alert, does he have just a little Down Syndrome?" Now, we hear it from his pre-school teachers. Over and over people in the profession of working with children with special needs tell us they literally can't believe how "typical" Jaden is. They tell us daily how "on par" he is with other kids his age and in fact is doing many things earlier than he should be! Never has "typical" been such music to my ears. Jaden is breaking down stereotypes just by being himself, showing everyone he meets that Down Syndrome isn't a curse or hindrance. It isn't because it's bad to have Down Syndrome, it's because we all innately want our children to be as independent and healthy as possible. I am not trying to take away his Down Syndrome by giving him these protocols, I am trying to help his body and mind work together as seamlessly as possible. Parent's like me may be up for quite a bit of criticism from other parents who really feel that we're not just accepting our children as they are. I understand this, but it couldn't be further from the truth. If your child had diabetes, you get them treatment, or if they have trouble reading, you get them a tutor, or if your child gets sick, you give them antibiotics. It's the same thing here. I wouldn't be able to live with myself knowing I didn't follow my gut instincts for my son and that I wasn't doing everything within my power to allow him a life to the best of his capabilities. Does every parent reading this have to agree? Of course not. That isn't the point of writing this. I am just sharing my personal experience, which is obviously different from everyone Else's.
If you are interested in reading more about these therapies, check out:
changingmindsfoundation.com and when you're done there, check out this excerpt from the documentary they just made about Down Syndrome and Theresa Cody.
http://www.youtube.com:80/
I rarely post twice in one day but I feel compelled to comment today on what has just occurred. Senator McCain has just chosen Governor Sarah Palin to be his VP running mate! Unbelievable. I really wasn't sure where I was standing on who I would vote for. I like Obama, I believe Obama, and I seem to trust Obama and I really like his wife. However I don't really care for or trust the VP he chose, Biden. I've been having several discussions with my father regarding this lately. He's really for McCain and not really crazy about Obama. I'm somewhere in the middle. However today I really got thrown for a loop. I was getting ready to leave the house when I turned on CNN. I just happened to catch the acceptance speech being given by Palin.
Wow. Was I impressed. I had never even heard of her before, or so I thought. And then my phone started ringing off the hook. I must have had 10 different people call me to tell me that Sarah Palin had a baby with Down Syndrome and he was only 4 months old! What? 4 months old?! And, she had 4 other children, one of whom is going off to Iraq in a few days. Then I remembered, I had read about Sarah Palin several months ago on my DSTNI group (Down Syndrome Targeted Nutritional Intervention) and in my local DS support groups daily email. Her name was passed around when she gave birth as well known figures names usually are when they have a baby with Down Syndrome. It seems there are several people in government with children with Down Syndrome, 4 that I can name. Maybe you know of more.
Anyway, I listened to this beautiful woman speak, so poised, elegant, focused, calm, confident and warm. I instantly got excited. I started thinking about the possibilities. Could there really be a woman in office? Could this be the woman we've been waiting to see in the White House? I sure didn't want Hilary to be the one. I couldn't bare the thought of the Clintons being back in the White House again (I don't trust him at all). But Sarah Palin, hmmm. It really got me thinking. So I listened to her speech and listened to the commentaries and then went to go pick up the kids from school. I decided to read everything I could about her in the last few hours, and I am so impressed with what I have read. It really seems like she has morals, values and ethics that can't really be bought like most politicians. Could this sway my vote? Would I vote for McCain because of her? Possibly. I do like McCain's wife as well. Maybe I could vote for a man who chooses to surround himself with 2 very intelligent, powerful women.
I read several quotes given my Sarah Palin regarding the birth of her son Trig. It brought back my own thoughts, which I believe are completely universal. One of her comments said "What is normal anyway? Show me normal." I can't count how many times I've said this when discussing Jaden. We found out about Jaden after he was born, and even then the Dr's weren't sure so they had ordered blood tests, which they lost. I remember my Ob/Gyn discussing the possibility that Jaden might have DS the day I was going to be released from the hospital. I was all alone in the room, thinking he was going to talk to me about Jaden's circumcision, and instead needed to tell me the Dr's suspected he might have DS. He gently reminded me that I had "refused" an amnio. I then reminded him I didn't "refuse" anything. I wasn't going to terminate my baby regardless, so the amnio meant nothing to me. He then told me "Jaden" was a cute little guy and that he was healthy and looked great anyway.
3-1/2 years later I still have people aske me the million dollar question, "Did you know before he was born?" It's as if they are trying to confront their own issues with how they would accept the news. Knowing full well that it's impossible to know how you feel. I was one of them, before. I actually no longer talk to someone because I realized I had nothing in common with them when they "honestly" told me they would have aborted had they known before hand. To which I said, "Then you would have been in the 90% majority, and I have never been in the majority with anything, and would never want to be."
I often wonder how any Dr. could scare any mother or father into not wanting a baby with Down Syndrome. I used to think I was "pro-choice" and that "pro-lifer's" were radical extremists out to destroy women's liberties. Wow, was I naive. I now realize that I never understood what abortion meant. I never understood our lack of acceptance as a society. I never understood our need to create the impossibly "perfect" baby. I never understood that the medical world is weeding out all medical "imperfections" prenatally at the cost of thousands and thousands of lives every year. Pro-Choicers argue that abortion needs to remain legal or it will become unsafe and there will be unwanted babies all over. I have heard from Dr's who have performed abortions, there's a letter on my website written by a Dr. himself who describes what he saw in carrying out abortions. I am not only pro-life, I am pro-education, pro-support, pro-difference and pro-truth.
Thank god I never let a Dr. talk me in or out of anything nor would I. But millions of parents do, every year. If only they knew. If only they had faith in their own ability to unconditionally love their baby, no matter what. If only they trusted God and the cards they were being dealt. I'll never forget the mom who told me one day as she was staring at Jaden. "My last pregnancy was terminated because they told us he had 'really bad Down Syndrome'." I just kept quiet knowing there is no possible way to detect prenatally "really bad" Down Syndrome, but had heard this before from other mom's who had also terminated. It sure made the mom feel better in her decision I guess, to say that the baby would have been really bad off anyway. She then went on to tell me that her recently born son, was paralyzed on one side and they didn't know if he would ever walk or stand. She also said that she knew God was punishing her. But that in her Upper East Side Manhattan World, her son with Down Syndrome would never have been accepted and he would have had a horrible life. I just sat and listened to a mom who was confessing to a stranger her obvious guilt. She then commented on how cute Jaden was and how he didn't really look like he had Down Syndrome and that he seemed so "normal".
I only said this to her when she was finished. "Jaden is the epitome of perfection and I thank God every day for showing me how ignorant I was before he came along. Now I am constantly aware of just how much growing I have to do and how deserved we all are of life."
Just thought I would update on Jaden's reading progress. It's quite phenominal how well Jaden is catching on to reading, especially at this young age. (he turns 4 in December)
We go on the website, Starfall.com and do the Alphabet. If you haven't been on this site, it's FANTASTIC! So great for all different learning levels, very visual and very fun. He LOVES it, plus he's getting really good with the mouse now. I can't believe how well he says all of the letters and sounds as well as repeats all of the words. His enunciation is almost perfect. He says his L's, S's, T's, R's etc. Like "Umbrella, Lyla, Horse". He now can sight read some words without picture prompts. I do alphabet picture cards, word cards, books and the computer with him every day. Children with Down Syndrome are visual learners and this is actually a great gift, not a disability what so ever. In fact, they are able to see it, learn it and remember it very easily, especially if it's stimulating to them. I am amazed at Jaden's ability to imitate and do tricks on command, he's always been good at this. When he was 6 months old I taught him to touch parts of his face just by watching me do it, and by repetition. I would say "Touch your mouth, eyes, nose" etc. and he would do it. No one could believe his talent for learning so quickly and remembering. He's been doing tricks for me every since, as you probably see in the video's!
As he gets older now, these skills just manifest more and more frequently. 2 days ago when I picked him up from school the teacher couldn't wait to tell me how he'd named all of his colors on the color blocks! Yesterday another teacher was working with him on the computer and could not wait to tell me how many letters he knew and how many words! She said "He's Reading! He's just amazing!"
I know that Jaden is doing well, however I really believe his abilities are all of our kids abilities. When we tap into "how" our child learns, we are able to customize their learning. He didn't know the word for "tree" the other day when I showed him the picture so instead he said, "outside, bird". So creative, don't you think!? Also, when he saw a girl making a face at him in a restaurant a few days ago, he just watched her as she was being silly. She was sticking her fingers in the outside corners of her mouth and stretching her lips apart. He just watched, but didn't imitate it back to her. A half hour later when the girl was leaving with her mom, they walked by us and Jaden looked up at us, stuck his fingers in the corners of his mouth and peeled his lips apart. He wasn't doing this at the girl though, he was showing us who this girl was and reminding us of what she was doing earlier. He didn't know her name, so this is how he identified her. So smart, so smart, our little guy. He misses nothing!
We don't have any baby sitters because we have no relatives that live close by and we haven't really found anyone we trust implicitly.
I thought I would let you all know that Healthiest Life is back online. From the emails I received over the last several months, many of you were wondering where we had gone and some were upset that we had not explained our departure. I have now learned from that mistake, obviously understimating the loyalty of the readers. In an explanation post on Healthiest Life, I go into detail a little bit about why I had to stop doing it. We have worked out the kinks though, and streamlined the format so that the website is much more effective and efficient now. Health and nutrition is truly a passion of mine, and spreading the word about healthy products is part of that. Personally changing the way I eat and passing it on to the whole family has changed all of our lives for the better. It truly is amazing what changing your diet can do for your health!
The updated format for the website is to feature 3-5 products a week from any given category which we research, review then recommend based on the natural ingredients and quality. Then the company passes on those products to you for FREE to try once we've notified them to let them know we've chosen them as our "Best of the Best" in that category. No catch to winning, simply email me to let me know you would like to win and why along with your information. I will notify when you win, which is a week after the product posts. Then the company will mail you the product! I hope you check us out, if nothing else to learn about a few great products!
P.S. Jaden hasn't had a runny nose in almost a year since we've kept him sugar free and gluten free. Of course there are the occasional slip ups, we're not "militant" and we do eat out a lot so we have to give in to gluten once in a while. However, 95% of the time we're sugar and gluten free and his health is completely different because of it! I highly recommend looking into it for your child, especially if they have Down Syndrome or other allergies. One thing that I've learned is that the digestive tract is responsible for 85% of our immune system, so that when it's not processing foods well, it gets clogged up and causes yeast build up, mucous, digestive issues, allergies, etc. This will be common knowledge amongst Dr's in the next 10 years, but only the really nutrionally oriented Dr's know this. Read about it and try it with yourself or your own child. It will change your life if you suffer from allergies or if your child is sick a lot!
Jaden is now 3-1/2 years old and I thought it was due time to document all of the things that Jaden CAN do, and do well. I thought I would start with 50 but I had to go to 101, just to throw that extra in.
So here we go.
- Ride His Bike
- Run Really Fast
- Talk A Lot (2 & 3 Word Sentences with Long sentences harder to understand)
- Laugh
- Box
- Wrestle
- Sing
- Pretend Play
- Throw A Ball Really Far
- Throw A Ball With Great Aim
- Hit A Ball with A Bat
- Catch A Ball
- Drives His Motorized Car
- Break Dance on Command
- Recognize Most of The Alphabet
- Sight Read Over 20 Words
- Defiantly Not Listen
- Do Things To get Attention
- Give Hugs & Kisses
- Hit His Sister
- Play for Hours with His Sister
- Memorize Songs On TV
- Memorize Lines From Shows on TV
- Memorize Shows Coming Next on TV
- Act Out Everything He Sees Like a Mime
- Communicates Very Effectively even When Words are Lacking
- Turns On & Off the TV
- Works on the Computer
- Takes his Shoes On and Off
- Brushes his Teeth
- Bruses His Hair
- Puts Lotion On
- Puts His Shorts On & Off
- Goes Poop & Pee on the Potty
- Puts His Trash in the Garbage
- Cleans Up After Himself
- Puts Dishes in the Sink
- Feeds Himself perfectly with Spoon & Fork
- Drinks from regular cups, water bottles and straws
- Imitates everything he sees
- Tries to do everything for a laugh or attention
- Makes sure you are listening to him
- Has a great sense of humor
- Great Dancer
- Has Great Rythm
- Plays the Drums
- Plays the Piano
- Eats Everything given to him
- Blows on food when it's hot
- Spits out food when its too spicy
- Turns on the radio
- Loves to fart then laugh
- Farts and burps and laughs on command
- Says funny words on command
- Loves to read
- Loves to repeat
- Loves to please
- Loves to rebel
- Loves to pet dogs
- Loves to help mommy & daddy
- Loves going places & doing things
- Blows kisses and waves to everyone that smiles at him
- Gets attention everywhere he goes
- Hams it up for everyone who gives him attention
- Winks at girls
- Tries to steal things from stores
- Loves to try on shoes
- Loves to try on clothes
- Loves to count to 10
- Sings the alphabet
- Sings Wheels on the Bus
- Sings Itsy Bitsy Spider
- Sings Row Row Row Your Boat
- Walks on the balance beam
- Does Sommer Saults
- Does Flips
- Does pull ups on the bar
- Does Push Ups
- Does Sit Ups
- Names All of His Body Parts
- Colors
- Buttons & Unbuttons
- Does Puzzles
- Plays with his trucks
- Plays with other children
- Goes up and down the slide
- Plays on the Swing
- Can't go fast enough or high enough
- Shares
- Comes into our room in the middle of the night
- Throws when mad
- Cries when hurt or sad
- Puts on and takes off shirt
- Puts on and takes of socks
- Follows his sister everywhere
- Makes everyone laugh
- Talks to the TV
- Runs up & Down The Stairs
- Gets Things when asked
- Swims
- Knows where we are when we're in the car driving!
I've sure been having a tough time keeping up with the blog. Hopefully this new video will keep some of you entertained. Those of you who still check in, that is :)
Ok, I've heard the stories about the "Super Genius" kids with Down Syndrome who start reading and recognizing words at the age of 3, (which is sooner than my typical, I think very bright daughter) but truly was a little skeptical. I've spoken to parents who have told me their child was reading at this early age, and have heard first hand accounts of where, when & how it took place, but still thought "I'll believe it when I see it", I admit it.
Until now. We've been working on letters and words for probably 1 year and a half, and have videos, flash cards, leap frog letter magnets, books, puzzles etc. Jaden has gotten fantastic at enunciating all of his letters and words really well, and I was beginning to think he was recognizing letters but wasn't quite sure. I know he loves all of these activities and loves being read to and trying to read. I aldo know when he watches certain shows, he repeats everything or even says things before they come on the show, but typically It's because I think he has memorized the song or words. Until now.
5 days ago, in Barnes & Noble, I was at the magazine rack sifting through some magazines. He was standing next to me saying letters out loud for several minutes until it had drowned into background noise. Finally I looked down at him and he had a magazine in front of him and he was trying to get my attention. "A", "N", "R", etc. was what Jaden kept saying over and over. He was saying the letters and pointing to them in the headline on the magazine. He kept looking up at me to see if I was going to praise him for his knowledge, but shock took over first. I quickly made him repeat what he had been saying to see if he was truly recognizing the letters. I said, "Jaden, where is the 'A'..." He then pointed to the A and said "A", then pointed to the N and said "N" etc. He was clearly reading all of the letters out loud and pointing to the right ones! I started yelling "You're reading, you're reading!" Until everyone sitting quietly started looking over and started clapping! Jaden was so excited, laughing and clapping back. His sister was so excited as well. What a moment, what a moment!
It's moments like this, that I realize how much I need to know he will be alright. Just when I think I'm completely confident in his abilities and future, I realize I'm not. I do have moments of fear and doubt, even though I don't let these moments take over, I still relish the times when he dispells any doubts I may be feeling. It is the reassurance of knowing he will read, he will talk, he will have a productive, fulfilling, exciting life. Do I need him to read now? Of course not. It's just knowing that he's "getting" it. He's really "getting" it. It is all sinking in. Priceless.
Why aren't there any magazines devoted to children with Special Needs? I mean a mainstream magazine, the kind you can pick up at Borders or Barnes & Noble. What's going on with this? I search the internet and only find various "periodicals" or smaller publications geared towards certain therapy fields or online magazines. I've even asked Jaden's therapists if they know of any magazines that I have missed out on, "NOPE" is always the answer. If anyone reading this knows of a magazine(s) that I'm not aware of I would love the name(s). Thanks so much.
Well after 1 very long year into potty training we have finally made a breakthrough! Any parent of a child with DS or even a "typical" child who is late with potty training will totally relate to our experience, I'm sure. Jaden, who has blown away so many stereotypes since arriving in this world 3-1/2 years ago has had a tough go at potty training. For over a year now, he willingly would sit on the potty and do his business be it #1 or #2, but we always had to be the one to catch him or predict when it would be coming. As most busy, working, parents will know, this is NOT EASY!!! I have read the books, received the brochures and will readily admit it is totally our fault that Jaden isn't fully trained by now, however we just haven't been able to devote 2 steady weeks to charting, diagramming, documenting and writing everything he's drank, when, where, how, with timers etc. It's definitely made me feel like a bit of a failure. My own sister-in-law who works solely with autistic children has told me 100 times, all kids can be trained in a week, as long as you stick to the plan. Well, we haven't been able to stick to any plan. And now, with summer looming in, and Jaden not being able to return to his beloved preschool and advance to the next age group until he's potty trained, I was starting to get a bit anxious and desperate. Just the thought of Jaden being in diapers much longer is very depressing to me, because I know he's ready.
Somebody must have heard my cries, because just this week, on a consistent basis, Jaden has been coming up to me and saying "Mommy, pee pee" while grabbing his pullups and trying to pull them down. So I, dutifully have been running him into the bathroom, putting him on the toilet, praising him, making him laugh, etc. and low and behold he goes! Then he flushes, washes his hands and turns out the bathroom lights, all things he loves to do. He has been initiating this at least 3 times a day now, which isn't every time he goes, however it's always for poop, and sometimes for pee! I can't tell you how ecstatic I am. I really think the pull ups have made a difference, because I think they're much more uncomfortable for him, and he wants them off as soon as they're wet. He has been going off into another room by himself FOREVER to go potty in his diapers, or even creeping into the bathroom but still going in his diapers, but not anymore! So many stereotypes with DS, but many of our kids can be trained within a typical time frame, and Jaden is truly proof of this! If I can get it done with him, anyone can, trust me! Good luck all you parents out there struggling with this, I totally understand how you feel, and it will happen, hang in there.
Well If anyone is still out there reading this blog or happens to stop by, I apologize for such a long break since my last entry. Obviously, so much has happened in the last 7 months, however all good! The only reason for my break was work, family, business, family, work, family, and work. I hope to be more regular in my entries again and also hope to be able to fit it into my schedule during the day. I miss reading all of my fellow friends blogs. I have so much to catch up on. In the time that I've been absent, one of my "blogging" friends published a BOOK, another few are pregnant again, some have even had more babies! Unbelievable what happens in such a short period of time. Congratulations and the most happiness to all of you!!!
Here's a quick update with Jaden, now 3-1/2 years old. He's been in a "typical" pre-school up until a month ago and was doing fabulously. The only problem is, he isn't "Fully" potty trained, and can't move up into the next class until he is. Developmentally he's ready to move on, except for this one little thing. He's 80% potty trained at home, but at school, he's not assertive about telling the teachers when he has to go. Unless they ask him regularly, he won't go on the potty. So we pulled him out of school and now have a wonderful woman come to the house who spends 3-4 hours a day with him. She is amazing. She takes him to the park, teaches him reading, writing, music etc. She's his friend and teacher and allows me to work. So, we're hoping he's potty trained soon. Once he is, we'll put him back in school.
I sometimes can't believe the stereotypes with Down Syndrome. The one that doesn't seep to apply to Jaden lately that much is "They're such sweet, lovable, caring people". Yes this is probably true most of the time, however, Jaden would better be described with different adjetives. I would be more quick to say he is feisty, disobedient, rebellious, rambunctious, curious, funny, happy, angry, sad, loud, talkative, and wild! "Sweet, lovable, caring" would be left for other times in describing him. So we have a wild 3 year old at home who is probably like most other 3 year olds and he's doing amazing! His favorite thing to do now is break dance. It's very funny, I'll upload a video soon. When we say "Jaden, break dance", he gets down on the floor and spins around, and break dances. More updates, soon and I look forward to hearing from you, if you're still out there!
