Silicon Valley Down Syndrome Network

Hi there!

Just wanted to share on July 8th , Jacob had his PDA closed, heart catheterization surgery at Stanford. Surgery was very successful and Jake did so great, so proud of him, he is so strong. 9am was surgery and at 730pm he was walking out of the hospital. Yay Jake!  So thankful to all of our amazing Stanford Drs and Nurses and staff. 

Hugs,
Amber and Jake

Tuisku is a busy and an amazing young woman. Like any typical Silicon Valley teen, Tuisku is involved in many activities. She is an accomplished Cellist and has played her Cello at the SVDSN Holiday party, Kizuna family concert in the past.  Besides cello, Tuisku has been swimming on her high school swim team for the last 4 years. She just received her varsity letters at a sports award ceremony on May 22nd. Tuisku loves art, and has been attending art classes for years. In fact, she will have a mini art show on Friday June 7th 6-8 pm at The Arsenal, ((208 Jackson Street, San Jose CA 95112). Tuisku is an avid reader, and loves to write. Tuisku loves to do volunteer work and has helped out in various festivals in South Bay Area, she has worked in the library and helped out in a summer camp for children. She even volunteered as a camp counselor at a science camp at Camp Campbell. Tuisku has been a student representative in her high school PTSA and received a scholarship from them on May 29th in the Senior Awards ceremony. She also received the Santa Clara High School Service Award at the ceremony. Tuisku will graduate from Santa Clara High School on June 5th and is looking forward to attending West Valley College in the fall. 

We hope many of you will stop by at The Arsenal to see her artwork on June 7!!

Click here  to watch Tuisku playing Cello with her brother Aku and sister Taika.                                                   

In Memory of Ellen Hovey 

October 2017

We are sad to announce that one of our founding members, Ellen Hovey, passed away recently. Ellen contributed to our community in so many ways, and we are grateful for the time we had with her. If you would like to help support her family please visit this page, ‘In Memory of Ellen Hovey’.

Passion and positivity characterized Ellen Hovey as most of us in the Down syndrome community knew her. She welcomed countless new parents into the Down syndrome family and gave us hope through her encouragement and example.

Ellen was a woman of faith who placed her relationship with God and her family, Dave and Jeremy, above all. She was a steadfast friend and powerful voice in the special needs community, opening her home every month for years to host the SVDSN Educational Advocacy Meeting.

Ellen believed in the power of inclusion and raising awareness of all that individuals with Down syndrome can do. She founded the Bay Area Buddy Walk in 2005 and served as the Buddy Walk chair in recent years, even as she was battling cancer. She spearheaded celebrations in San Jose on World Down Syndrome Day. She pulled together family dinner nights to connect families and build a community of support. She answered countless emails and posts on the message board, providing guidance, practical advice, and hope. She worked tirelessly supporting organizations that helped people with Down syndrome in various ways, such as Parents Helping Parents and Dale Law Firm.

She fought every battle that came her way with grace and patience, advocating for her son to ensure he had every chance available and finding ways to pave a path for those following after.

As a mother, Ellen empowered her son to advocate for himself and to be independent in the world. She taught through her example advocating for our children but also empowering them to carry the torch and advocate for themselves. She encouraged parents to believe in themselves, to embrace their power of knowing their child best, and to fight the good fight while remaining positive.

 

Ellen demonstrated the power of building bridges, bringing together community, and leading the charge. She provided us with an example of how to raise our children to open doors and break barriers.

 

Ellen will be missed deeply by the SVDSN community of families. She touched many lives through the outreach and work that she did through the years. We will carry her in our hearts as we remember all that she did and will do our best to continue the work that she believed in so deeply.

The Hanen class was AMAZING and I would thoroughly recommend it for parents as well as speech therapists as well as any caretakers. There is a book which I bought to go with the class “It takes Two to Talk”. The instructor gave us a workbook as well to do weekly assignments and the more you put into the class the more you get out. The instructor came to our home twice and video taped us interacting with our daughter and showed us ways to improve. We dissected it piece by piece and it was so helpful. I leaned never to say to my daughter “Say blah blah blah.”

I learned what communication style my child likes and what stage she is at so I can tailor the way I talk with her. She can only communicate with one word at a time so using anymore than 2-3 words at a time is too much for her. I learned to OWL (observe, wait and listen). It takes Sarah about 5-7 seconds sometimes to understand what we are saying and then another 5-7 seconds to respond; so OWLing is so important.

I couldn’t believe by just waiting how much my daughter was telling me with looks, pointing, etc…; which I didn’t pick up on before doing this workshop. Before, I would just talk, talk, talk and she couldn’t get a word in edge wise. I learned to follow my daughter’s lead, instead of leading her. I learned how to play, read books, and interact with music in ways I hadn’t before.

Yes, I would definitely recommend the class.

Janette Najar

      Thursday February 27, 2014 was the Buddy Walk on Washington D.C. and SVDSN was there, braving the cold weather, to advocate for Down syndrome. The SVDSN delegation, Dashiell, Marisol, Kristin, Bill, and Eric marched the halls, talked with California Senators and House Representatives (mainly staff), and advocating for legislative changes; which could  improve the lives of person with Down syndrome.

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The Buddy Walk on Washington, sponsored by the National Down Syndrome Society; which SVDSN donates 7% of the Bay Area Buddy Walk proceeds to, is the main legislative group lobbying Washington D.C. on behalf of persons with Down syndrome. This year’s Buddy Walk on Washington D.C. had the most participants is the history of the Buddy Walk on Washington D.C., with close to 320 participants advocating Capitol Hill for votes and funding. This year California had fifteen participants, seven from Northern California and and eight from Southern California.

   

To learn more about the Bddy Walk on Washington go to:

http://www.ndss.org/Advocacy/Advocacy-Programs/Buddy-Walk-on-Washington/

If you have interest in joining the SVDSN Legislative Advocacy Group and help SVDSN advocate local, state, and federal politicians, contact Bill O’Dea at info@svdsn.org.

Thank You,

Bill O’Dea

SVDSN Governing Board

A good time was had by all and SVDSN was honored with it’s very first award, graciously accepted by members of the board of directors and Buddy Walk committee.

Having a wonder time, wish you were here!

Jr. Counselor helps a camper.

Sibs at Sun Camp

Math, reading and writing disguised as fruit salad!

Outdoor play: water painting, playdough, bubbles and more!

Playground fun and a lesson in taking turns.

Decorating super hero capes.

Splashing sisters

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Last year World DS Day kinda caught us unprepared to do anything big as a group. This year we provided buttons for folks to wear and share, but some members took it upon themselves to go a step further; to think GLOBALLY and act LOCALLY.

This was our first time celebrating as my baby Gracie was just born in December. Since she is not in school yet, our whole family dressed in blue and yellow. My older two daughters and I painted our nails blue and yellow too! When people asked my daughters about their nails, they took the opportunity to tell them that it was World Down Syndrome Day. They also told them about Gracie and what Down Syndrome is.

Felicie, baby sister, mom and ST on World Down Syndrome Day

Circle of Friends join around their friend with Down Syndrome at Buchser Middle School to recognize World Down syndrome day.

Penny sportin’ her Buddy Walk shirt

What a day! Congratulations to the Buddy Walk team and their will, passion, love
and commitment to enhance the lives of us all. I walked away from Saturday’s
SVDSN Buddy Walk knowing every person who attended will never be the same. They
may look the same, smell the same, but they are not the same.

What began as a walk with food and a little entertainment became a full fledged
street celebration…Grass roots and guttural to the core. The message was sent
on this sunny, Fall day, at Cunningham County Park. It is now the responsibility
of every person in attendance to take the celebration to their schools,
communities, and businesses.

The group that needs to lead this charge is the Husbands and Dads. Our wives
have been carrying the torch for years while we are off doing whatever it is we
do to make a living. I am guilty as any of you and watched as my wife and this
year’s Buddy Walk team (a couple of men) and all women, turn a single day into
magic. It wasn’t about them. It was about their/our children. They were all
in from the outset. I was so proud of the team, taking no prisoners.

Truth is if we want to change our schools and communities for more than one day
per year it will take all of us. It is up to every man, woman, and child along
with relatives, teachers, and politicians. I, for one, am glad there was a day
like Saturday because it showed us all what can be. Now it is up to us to make
Saturday’s success become the norm. Our wives(and a couple of dads) may have
started something but it is now our turn to take the baton and finish the race.

Thank you for shining the light on what can be…I am looking forward to changing
additional lives before our next get together.

With Admiration,

Tim Gruber

Anticipating your baby is like driving down a country road at twilight. You take in the sights; the daffodils, the setting sun. You had plotted your course on a map, so you have an idea where you are going and people have told you basically what to expect. As you near an expected landmark, the sky darkens and night falls, as expected. You switch on the headlights and continue on following in their path.

Then the lights go out.

You cannot see the road ahead or the terrain around you. Your heart jumps.Your mind races. “Where are we going?! Why can’t I see?! I could run off the road; hit a tree or another car!” Your mind might even try to fill in the blank canvas before it.

Pull over and stop.

Use your other senses. Listen. Feel. Once you commit to the journey and the sun rises again, you will find that the road is much, much wider than you though and the flowers and the sunsets are exactly the same.