National Down Syndrome Society E-Newsletter

       

June 2012 

  

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NDSS Your Way: Independent Fundraising

 

 

NDSS Your Way launched on May 1 and we have already been inspired by so many of your campaigns. Thank you for your enthusiasm! This new online fundraising program invites you to compete, celebrate and create with us. NDSS Your Way is geared towards independent fundraisers interested in raising money on behalf of NDSS. Participants create personalized fundraising web pages in support of an event or individual pursuit. Each campaign is hosted independently, and NDSS staff provides support and guidance as needed. All proceeds raised through the NDSS Your Way program go directly to NDSS.

 

Fundraisers are invited to create a customizable web page in one of three categories: Team NDSS, NDSS Celebrations or NDSS New Ideas. Regardless of which category you choose, your personal page can pay tribute to someone who inspires and motivates you.

 

As an NDSS Your Way fundraiser, you further the NDSS mission of advocating for the value, acceptance and inclusion of people with Down syndrome. NDSS works to create a culture that fully accepts and includes the more than 400,000 Americans with Down syndrome. We envision a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.

 

NDSS encourages you to run a race, host a block party, plan a dance marathon, grow a moustache, climb a mountain - however you choose to do it, do it your way and do it for Down syndrome!

 

Click here to learn more about NDSS Your Way and get started!

Click here to check out the NDSS Your Way Pinterest Board.

Click here to email us with questions and comments.

  

NDSS National Policy Center Update

  

ABLE Act Grows in Support - Have You Reached Out to Your Members of Congress?

 

The Achieving a Better Life Experience (ABLE) Act (H.R. 3423/S.1872) has reached 21 cosponsors in the Senate and 156 in the House. 

 

Find out if your members of Congress have cosponsored this important legislation:

- Click here to view the current list of Senate cosponsors.

- Click here to view the current list of House cosponsors.

 

NDSS offers three easy ways to contact your Senators and Representatives:

  • Call - click here to view our call-in template.
  • Write - click here to use our email template.
  • Meet - click here to learn how to set up a meeting with your Senators and Representatives.

On May 22, NDSS co-hosted its monthly webinar series with Dads Appreciating Down Syndrome (D.A.D.S.) National. The webinar was titled "How You Can Help Us Pass the ABLE Act Today!"  Click here to view the slides

 

National Alzheimer's Plan Published - Now Includes Down Syndrome

 

On May 15, the Obama Administration and Department of Health & Human Services (HHS) published the National Plan to Address Alzheimer's Disease. The incidence of Alzheimer's in people with Down syndrome is estimated to be three to five times greater than that of the general population; therefore, NDSS strongly advocated for inclusion throughout the plan.  The plan establishes a taskforce to take steps towards addressing the unique care challenges faced by people with younger-onset Alzheimer's disease, and improve access to long-term services and supports for younger people, including those with Down syndrome.

 

Click here to view the National Plan to Address Alzheimer's Disease.

 

U.S. Department of Education Releases Restraints & Seclusion Principles

 

On May 15, the U.S. Department of Education (USDOE) issues a Restraints & Seclusion Resource Document which highlights 15 principles upon which to base practice regarding the use of restraint and seclusion in schools. Although the resource document represents non-binding guidance, the principles represent the most formal taken by federal authorities to date. The USDOE principles offer suggestions to schools and districts on evidence-based practices that are known to prevent and eliminate restraint and seclusion use. NDSS continues to advocate for federal and state legislation that eliminates abusive restraints and seclusion practices in schools.

 

Click here to view the Restraints & Seclusion Resource Document.

 

Roundtable Convened to Address Special Education Policy Recommendations

 

In May, NDSS hosted an education roundtable along with the Collaboration to Promote Self-Determination (CPSD). This roundtable featured the nation's leading experts in special education policy to develop a group of agreed-upon policy recommendations related to school district accountability. This discussion focused on the population of students with disabilities who take an alternate assessment on alternate academic achievement standards, "college preparation and career readiness" for students with the most significant cognitive disabilities, and measuring academic growth. The recommendations will be presented to the USDOE and members of Congress later this year.

 

Mamie's Mile Raises $20k to Help Support the NDSS National Policy Center

 

The NDSS National Policy Center is the proud beneficiary of more than $20,000 that was raised this year through Mamie's Mile. The fundraiser was planned by Elizabeth Manresa and Teddy Eynon in memory of their daughter, Mamie Grace, who passed away after suffering complications from heart surgery. NDSS thanks Elizabeth, Teddy and all of the donors and committee members that supported Mamie's Mile and we are delighted to advocate with them in Washington, D.C.  

 

Registration for the State of the Art Conference on Postsecondary Education Now Open

 

The annual State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities will be on November 29 - 30 at the George Mason University (GMU) Campus in Fairfax, VA. Register now to save with early bird registration until July 15. The conference is sponsored by NDSS and GMU. 

 

Click here to learn more and register.

 

State Policy Updates

Louisiana Government Affairs Committee Leadership Conference to Take Place in June

 

NDSS will be facilitating the Louisiana Government Affairs Committee (GAC) Leadership Conference on June 29 - 30 in Baton Rouge, LA.  The LA GAC Conference is part of the NDSS initiative to strengthen statewide advocacy efforts and form state GACs. The Conference agenda will include briefings on critical policies related to education, health and adulthood; presentations by national experts and state leaders; exploration of grassroots strategies; and the formalization of a GAC that will protect and improve policies concerning individuals with Down syndrome and their families. 

 

Click here to contact NDSS VP of Advocacy & Affiliate Relations Sara Weir for more information

 

Kansas Advocates Help Delay Coverage for Developmental Disabilities

 

An agreement has been reached to delay coverage of Kansans with developmental disabilities for one year under KanCare, the state's new managed care plan. Hundreds of disability advocates from both provider and parent advocacy organizations, including the Down syndrome community, protested at the Kansas Statehouse on several occasions, held Town Hall meetings, met with the Division Director of Aging, flooded the Governor's office with emails and worked with state legislatures to introduce House and Senate bills to delay implementation. Advocates are concerned that the new managed care system would apply to the long-term care needs of individuals with Down syndrome, and NDSS is closely monitoring other state efforts to change benefits for people with Down syndrome.  

 

Disability Organizations Filed Suit Against Sheltered Workshops in Oregon

  

NDSS is following an important court case in Oregon, in which a number of disability organizations filed a suit on behalf of 2,300 individuals with disabilities working in sheltered workshops, alleging that the state failed to develop and fund integrated employment services. The state court dismissed the case but indicated that it will allow the plaintiffs to amend (properly state their claim) and resubmit it. In addition, the U.S. Department of Justice issued a Statement of Interest, a technical legal procedure, stating that the regulations for the Americans with Disabilities Act determine that a public entity "shall administer services and programs and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities." This first-ever lawsuit could have national implications and transition employment away from sheltered workshops.   

 

Northwest Down Syndrome Association 7th Annual Education Conference 

 

The Northwest Down Syndrome Association (NDSA) held a conference in Portland, OR titled "All Born (In)" which provided tools, networking and inspiration for parents, professionals and advocates committed to inclusion and universal design for learning. NDSS VP of Public Policy Madeleine Will provided a keynote on the origin of the Individuals with Disabilities Education Act (IDEA). NDSS Affiliate Advisory Board Member Heather Sachs gave a presentation on the universal design for learning initiative that was developed in the state of Maryland as a result of the advocacy efforts of the Maryland Down Syndrome Advocacy Coalition (MDAC). 

  

Sign up to Receive Important Policy Action Alerts

Be an Advocate!

 

You can help make a difference in the lives of people with Down syndrome through advocacy year-round! Whether you aren't sure who your local elected representatives are or you are a seasoned advocate, there are many ways for everyone to get involved.

 

Click here to learn more and to sign up to receive important action alerts from the NDSS National Policy Center.

 

Monthly Webinars

Each month, NDSS provides an educational webinar free of charge to anyone who is interested in learning more about Down syndrome and health, education, research, family life and more. In past months, families, self-advocates, affiliates and others have enjoyed presentations including Helping You Ensure Quality of Life For Loved Ones with Special Needs with Joan Cleveland and Brett Berg of Prudential Life Insurance, Prospects for Improving Cognition in People with Down Syndrome with Dr. Omar Khwaja and How You Can Help Us Pass the ABLE Act Today, a joint presentation with representatives from NDSS and D.A.D.S. National.

 

Click here for more information on past NDSS webinars.

 

Join NDSS for our June webinar when the topic will be "Learning is for Everyone: Making College a Reality for Students with Intellectual Disabilities." Donald Bailey, Executive Director of the Charleston Transition College, will recount the inspiring true story of his family's quest to provide postsecondary opportunities for young adults with intellectual disabilities. NDSS National Policy Center Senior Policy Advisor, Postsecondary Education, Stephanie Smith Lee will share resources and action steps.  The webinar will be on Thursday, June 14 at 1:00pm ET.

 

Click here to register. 

 

Are there topics you would like to have covered by an NDSS webinar? Click here to email suggestions to NDSS Manager of 

Education & Programs Vanessa Quick. 

 

 Buddy Walk® News

Visit www.buddywalk.org to get involved and be inspired!

 

Give Us Your Best Shot: Submit Your Photo for the 2012 Times Square Video

 

On Saturday, September 22, NDSS will kick off Down Syndrome Awareness Month and the New York City Buddy Walk® in the heart of Times Square with a video presentation featuring more than 200 individuals with Down syndrome from across the world. We invite you to submit a photo for this one-of-a-kind feature presentation!  The contest will run from May 1 - July 13 and winners will be contacted the week of August 1. 

 

Click here for more information about the Times Square Video.
Click here to submit your photo. 

 

2012 Buddy Walk Registration

 

Attention Walk Organizers: Buddy Walk events must be registered each year with NDSS.

If you have already registered your Walk for this year, you do NOT need to register again. If you have not registered your Walk, please do the following:  

 

- Click here to log-in using your user name and password from last year.

- Once logged in, click on "Register a 2012 Walk" and complete your Walk registration.

- A custom license agreement will be emailed to you once your registration has been reviewed.

 

If your group is interested in organizing a Buddy Walk for the first time, please click here to get started.

 

Buddy Walk Conference Recap

 

On Saturday, April 28, NDSS hosted the fourth National Buddy Walk Conference in Boston, MA. A very special thank you goes out to the Massachusetts Down Syndrome Congress for co-sponsoring this important event with us. The Conference was attended by nearly 70 people representing 22 different groups from 19 states.

 

Click here to view the conference schedule and listing of breakout sessions.

 

The Conference included announcements about our newest national partner, VacationRoost, which will be donating vacation lodging, lift tickets, resort branded items or other vacation related items to selected Walks in Utah, Colorado, California, Idaho and New Mexico. VacationRoost offers the largest selection of professionally managed vacation rentals at the most popular ski and beach VacationRoost destinations across North and South America. A vacation rental is a home, condo, cabin, or other type of lodging that offers more space, privacy, and authenticity than standard accommodations. VacationRoost offers over 150,000 different vacation rentals in over 85 destinations. Vacation Roost is very excited to be a national partner with the Buddy Walk Organization. Their company and employees are very involved in the community - from fundraisers to races to volunteer organizations, they invest in causes that improve everyone's lives.

 

Click here to learn more about VacationRoost.

 

NDSS also announced details about the free gifts from our returning national partners Signing Time! and Down Syndrome Footprint. (Stay tuned for more information about each of these opportunities.)

 

Click here for more information about Down Syndrome Footprint.

Click here for more information about Signing Time!

 

At the awards ceremony, NDSS honored several groups that stood out from the pack in 2011. Certificates were presented to the Four Directions Buddy Walk for bringing the message of the acceptance and inclusion of people with Down syndrome to the Navajo Nation, the Massachusetts Down Syndrome Congress for their inclusion of self-advocates in all aspects of their Buddy Walk and the Down Syndrome Association of Tallahassee for their creative incentive for top fundraisers.

 

If you'd like access to conference presentations, click here to register as a virtual attendee.


Thank you for helping us to make the fourth annual National Buddy Walk Conference an overwhelming success! 

 

Share Your Buddy Walk Stories

  

Do you have a Buddy Walk story you'd like to share? 

  

Click here to view the My Great Story Buddy Walk section. 

Click here to share your Buddy Walk story!

 

Stay Connected!

  

Click here to become a fan of the Buddy Walk on Facebook.

Click here to follow the Buddy Walk on Twitter.

Click here to follow the Buddy Walk blog.

 

NDSS in the Media

 

NDSS is pleased to work with so many people across the country who help us further our mission of promoting the value, acceptance and inclusion of people with Down syndrome. We thank those who covered NDSS through both traditional and social media outlets this month.

 

In Wood Dale, IL, Wood Dale Press cited the NDSS Down syndrome facts in an article about a Ted Callahan, a self-advocate in training for his 15th Special Olympics competition.  

Click here to read the article.

 

SheKnows, a national online community, showcased NDSS Down syndrome facts while featuring Ryan Langston, the self-advocate model of Target and Nordstrom fame.

Click here to read the article. 

    

  

A.T.TipsCast interviewed NDSS National Buddy Walk® Director Becky Switalski about the

Buddy Walk.

Click here to read more and listen to the interview. 

 

 

Daily RX covered a study about heart disease funded by NDSS and others. 

Click here to read the article.

 

  

We would like to extend a shout out to those who blogged, posted, tweeted, pinned or otherwise shared NDSS news via social media this month. Here are a few of those who did: 

 

MalichisMinion 

emkelly19
TreytonsPosse 

RichMistkowski 

cookiecruiser24 

Angie.MooreJones
KellyJoyCederholm

Jeannette.Welsh
kimberlynewwomen  

mary.farfaglia

JulieSchleyer

Caolin

CindyHickox

MishaylasColors

runnnempty  

 

Like us on Facebook Click here to find NDSS on Facebook.

Follow us on Twitter Click here to find NDSS on Twitter.  

Find us on Pinterest Click here to find NDSS on Pinterest.

 

Straight Talk with Chris Burke

  

NDSS Goodwill Ambassador Chris Burke is best known for his TV role as Corky Thacher on the hit ABC show "Life Goes On" and his recurring role as Taylor, an angel, on the CBS series "Touched by an Angel". Chris works in the NDSS office, where he is a member of the staff. As an actor, singer, writer, and dedicated self-advocate, Chris has received numerous awards from local and national organizations for his tireless and inspiring work on behalf of people with disabilities.  

Father Knows Best

  

There are a couple of things that I have learned from my dad. 

 

He has a great sense of humor and he likes fishing, baseball, basketball and football. His favorite food is chocolate éclair with cream. He likes to work around our house in Point Lookout, NY. He likes to read newspapers. And most of all, he likes to look at the outside menus of local restaurants.  God bless my mom!

 

When I was on the set of Life Goes On, he helped me respond to my fan mail. He has always supported me in my career and he attends advocacy events like the Buddy Walk and NDSS Gala and Luncheon. 

 

As my dad he has taught me a lot about how important it is to get an education and to make sure that I do the right things.  It's about his love, support and encouragement.  He's a great husband and grandfather, and, most important, he's my dad. Happy Father's Day!  

         

Click here to view Chris' submission for the My Great Story campaign's Father's Day section. (Click here to share your Father's Day story!)

 

Fundraiser Focus

 

NDSS is energized by motivated people who contact us about wanting to make a difference in their community and on a national level. Each month, this section features an individual, family or group who has donated time and energy to creating exciting ways to support the value, acceptance and inclusion of people with Down syndrome by raising awareness and money for NDSS.  


Aly Dakin

 

NDSS met Aly Dakin when she registered to be a part of NDSS Your Way.  Aly lives in Peoria, IL and is a busy mother of five children. She is a fan of Kelle Hampton's blog, Enjoying the Small Things, and enthusiastically followed Kelle's progress as she raised money for NDSS in honor of her daughter Nella's first and second birthdays. Aly does not have an immediate family member with Down syndrome, but she was moved by the outpouring of support and donations in Nella's name.


When Aly gave birth to her fifth child, Willow, she was thankful to welcome another healthy baby. She also thought back to Nella, who has Down syndrome. Even with her extra chromosome, Kelle views Nella as perfect as any other child. While staring at her newest daughter Willow, who does not have Down syndrome, and thinking about Nella and Kelle, Aly felt immediate respect and admiration for all women who love their children so deeply after receiving an unexpected diagnosis.

A year has passed since Willow was born and Aly has been forever changed - not only by her own five children, but by women like Kelle Hampton who have shared their personal stories about raising a child with Down syndrome. In addition to celebrating Willow's milestone birthday, the Dakin Family is choosing to honor the many incredible children with Down syndrome by selflessly encouraging donations through their NDSS Your Way page in lieu of birthday gifts. 

The Dakins set their fundraising goal at $250 and asked their friends and family to join them in their mission to make a difference. To date, they are more than halfway there having raised $140. NDSS is honored and proud to meet the Dakins and we look forward to meeting other families like them.

 

Click here to visit Aly's NDSS Your Way page in honor of Willow's ONEder Party. 

 

Scholar Spotlight

  

Each year, NDSS awards postsecondary scholarships to students with Down syndrome through the O'Neill Tabani Enrichment Fund. In 2011, twelve outstanding students received grants to help cover the cost of their postsecondary or enrichment courses. Recipients of the 2011 O'Neill Tabani Enrichment Fund were invited to write about their experiences as students.

 
Leora Fried speaking at a local event.

This month's Spotlight is on Leora Fried of Brooklyn, NY. She shared the following about her educational experiences:

 

Hello, my friends.  Learning is hard for me, but I am making slow progress.  My teachers are proud of me because I keep working and I don't give up. Let me tell you what I am learning in school:

 

- Number Sense - By counting on a hundreds chart, I will be able to add and subtract to tell how much money I need in order to buy something, and how much change to get back.  This also helps me follow the calendar better in order to plan my life. 

- Messaging - So that I might get a meaningful job, I am learning to clearly write down an incoming message to pass on to someone else. 

- Metacognition - A big word that just means learning how to break down information into small parts, and then using strategies to understand and solve problems.

 

I enjoy life, and plan to get the most out of it.  Anyone can learn.  Don't let someone tell you different!

 

NDSS congratulates Leora on her hard work. She is a great role model for other students with Down syndrome who wish to pursue their dreams to enrich their lives through postsecondary education.

 

Click here to learn more about past O'Neill Tabani Enrichment Fund recipients. 

 

O'Neill Tabani Enrichment Fund Applications Available! 

 

The O'Neill Tabani Enrichment Fund offers financial assistance to adults - 18 and older - who have Down syndrome and wish to continue to enhance their lives by taking classes or enrolling in postsecondary educational programs.

 

Click here to learn more about the O'Neill Tabani Enrichment Fund. 

Click here to download the application.  

 

Gaps in the Maps Project 

 

 

Help Fill in the Gaps: 

All Families Deserve Access to Support and Information!

 

 

Have you or a friend had a difficult time finding a Down syndrome support group when your child was first born or when moving to a new area? We're determined to change that. NDSS has partnered with Down Syndrome Affiliates in Action (DSAIA) and the National Down Syndrome Congress (NDSC) to ensure that all families have access to support and information from a local Down syndrome affiliate through the Gaps in the Maps Project.

 

We invite you to get involved!

Click here to complete a brief survey by July 31.  

- Share the survey link with all your friends on Facebook and Twitter!

- Talk about this project with at least one family or organization in the Down syndrome community. 

- Be creative... the more ways we share this project, the more families will receive the support and information they deserve!

 

Click here for all the latest project details.

Click here to contact DSAIA Executive Director Deanna Tharpe via email, or call 701-425-7129.

 

New Fandango Fundraising Tool for Affiliates - Everyone Loves the Movies!


 

 

 

NDSS is pleased to offer a new opportunity for local organizations to raise money all year long, with almost no effort. NDSS was recently contacted by Brad Pitzele, devoted and marketing savvy dad of Brianna, age three, who has Down syndrome. Brad introduced us to the Fandango affiliate program through which individuals can raise money for their local organization when they refer ticket sales through their group's unique Fandango affiliate link. Thank you, Brad!

 

Signing up is as easy as 1,2,3!

 

1. Click here to register your local organization or group as a Fandango affiliate (you do not need 501c3 status to register).               

2. Contact Mimi Vuong, Senior Marketing Manager at Fandango to let her know you are part of the NDSS program, and give her permission to let us know how much you raise (the money you raised for your affiliate will go towards your organization or group, but you can help us track the success of the program). She'll answer any questions you have! Click here to email or call 310-954-0278 ext. 157.

3. Market the program on your website. Click here to see how. 

 

Click here if your organization or group does not sign up, but you want to participate by purchasing tickets to raise money for NDSS.

 

Win free tickets!

 

Join Fandango's Affiliate Program by June 15 and be automatically entered for a chance to win four free movie tickets - see rules below.

 

Rules: Open only to legal residents of the U.S. who are 18 years or older and have a physical mailing address in the U.S.  All applicable federal, state and local laws and regulations apply. If you are under 18 or a legal minor you must get permission of your parent or legal guardian to enter. No purchase necessary, void where prohibited by law. Sweepstakes period is between 06/01/12 9:00am ET to 06/15/12 5:00pm ET. Entries will only be valid if you mention NDSS. One winner will be selected randomly on 06/18/12 and the prize will be delivered via email.

  

My Great Story Father's Day Section

 

 

The My Great Story campaign seeks to ignite a new way of thinking about people with Down syndrome by sharing stories written by and about them. In honor of Father's Day on June 17, this month we're adding to the celebration by sharing stories about dads of people with Down syndrome. If you have a child with Down syndrome or know another dad who does, share the story! Self-advocates, we especially want to hear how you're celebrating Father's Day. 

 

Click here to share your story. 

Click here for a flyer to share with other dads who have a story to share!

  

My Great Story of the Month Contest 

 

 

 

 

Congratulations to Anne Hollis of Elmwood, IL on winning the My Great Story of the Month Contest! Anne's story received the most votes in May and she will be receiving a $100 gift certificate to Rhyme&Reason Clothing. 

 

The author of the story with the most votes in June will win four nonfiction books from William Morrow including an autographed copy of Kelle Hampton's bestselling memoir, Bloom: Finding Beauty in the Unexpected; Ree Drummond's bestselling cookbook, The Pioneer Woman Cooks: Food from my Frontier; Claire and Mia Fontaine's memoir, Have Mother Will Travel: A Mother and Daughter Discover Themselves, Each Other, and the World; and Taylor Jones' Dear Photograph.

 

Share your story and spread the word throughout the month to win this prize!


Click here to share your story. 

 

As one of the industry's premier fiction and nonfiction publishers, William Morrow is home to such bestselling and award-winning authors as Dennis Lehane, Elmore Leonard, Ray Bradbury, Tim Dorsey, Dorothea Benton Frank, Neil Gaiman, Kim Harrison, Faye Kellerman, Laura Lippman, Gregory Maguire, Susan Elizabeth Phillips, James Rollins, and Neal Stephenson. Our bestselling nonfiction authors include Kelle Hampton, Gregg Allman, Ree Drummond, Steven Levitt and Stephen J. Dubner, Guy Fieri, John Grogan, Chris Kyle, James Swanson, and Frank Warren. American publisher William Morrow founded his publishing company in 1926; now an imprint of HarperCollins Publishers, Morrow celebrated its 85th birthday in 2011. 

 

Click here to learn more about William Morrow and here to follow William Morrow on Facebook.

 

My Great Story: Stories of the Month

 

Each month, the two stories with the most votes on the My Great Story site are featured in this section. The votes are reset at the end of each month.

 

To share your own story, visit www.ndss.org/stories.

The Day My Life Changed

Anne Hollis
Elmwood, Illinois

 

My life changed in February 2008, when Meg was almost two. Her Easter Seals PT, Stephanie, told me to go crawl around our house to see life from her perspective. As I drove home I wondered, "What's life like from Meg's perspective?"  

 

I thought about the day she was born. Many people cried that day, myself included, but I never questioned Meg's tears.  I wondered, "What was Meg crying about?" I know babies cry, but I kept wondering about her tears specifically.


I thought maybe that day she also learned of her Down syndrome diagnosis. That news surprised us, maybe it surprised her too. Maybe she had to recreate her own dreams. Maybe she was afraid.  Lots of us were.  Maybe she was scared too.


Then I had a thought that changed my life.  While I was pregnant, I imagined a "perfect" child. I had hopes and expectations for who she was going to be. When she arrived and we heard the diagnosis my initial reaction was sadness. I had thoughts of "This wasn't supposed to happen!"  "I can't do this." "I don't want to do this." Maybe in those first few minutes of meeting me, she had similar thoughts.  Maybe during those months I carried her, she dreamt of her "perfect" mother and had expectations of me. When she arrived and realized I'm not beautiful, brilliant, rich, or perfect she was sad. Maybe she cried disappointing thoughts of "This lady wasn't supposed to happen to me!" "I can't do this!" "I don't want this mom."


The thought that I was the disappointment tore me to pieces. Understanding that I might be the promises unfulfilled, the dreams not realized, I began to beg for a chance. "Please Meg, I know I'm not perfect, but give me a chance."  "No one will ever love you the way I can!" "Don't give up on me Meg, I'll spend every day of my life working to make you proud." These were some thoughts I had as I begged forgiveness for the fact that I'm not perfect and asked for acceptance.


Meg's Down syndrome is a blessing. She gave us courage to adopt Alina.  She helps me be a better mother to all four of my kids.  She inspired me to change careers and advocate for people of all abilities. She has given me a voice to speak against ignorance and hate. She has helped me to love myself. I'm not perfect, but I no longer feel as though I have to be as long as I'm trying my best.  She helped me see that beauty comes in all shapes, sizes, colors, and abilities. She has given me patience, laughter and love. My life is so much different than I imagined yet so much better than I ever dreamed. She has taught me that life isn't about having kids that make me proud. Rather it is about being the type of mom, wife and person my family can be proud of.    

 

Bake a Difference
Kristie Richardson
Tacoma, Washington


My son Noah has inspired me to be a better person. Do better. Give better. Think bigger! He has inspired me to inspire others. That is how the "Bake a Difference" Cookbook came to be at the Embassy Suites Seattle Airport. I am grateful to work for a hotel brand that not only promotes "Making a Difference" in the community, but gave us an opportunity to apply for a grant to help move our project from the "idea" phase to the "reality" phase.

 

This year, we were selected by our hotel brand leaders as one of three finalists for the "I Can Make a Difference" award, and were later chosen by our peers across North America as the overall recipient of $7500! The cookbook is a collaboration between our team members and the Puget Sound Down syndrome community and all of the funds will go towards creating a cookbook that will be filled with favorite family recipes, a bit of family history, and a special something about the members of the Down syndrome community. This, combined with beautiful professional photographs of our friends in the Down syndrome community will prove to be a valuable tool in sharing our families with the community, thus hopefully generating participation in more Puget Sound Down Syndrome Community events. 

 

Our intent is to not only promote awareness of Down syndrome and how we share more similarities than differences, but also to generate a continuous flow of revenue that will help this small organization, help others. We felt like we wanted to do more than a one-time donation... we wanted to create a legacy. Noah has truly inspired all of us at the hotel and has given us the drive to give back to our local community. He has a smile that will light up the room and is the cutest little chef you have ever seen! We are thrilled to have the backing of the Embassy Suites brand behind our cookbook project and can't wait to deliver the final product!


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Do you have questions or comments about the our e-newsletter or want more information about NDSS in general? Click the "Give Us Your Feedback" button below.

 

We look forward to hearing from you!