Well, it would seem that summer is creeping ever closer. The first schools have closed their doors for the season, and the rest will follow in the coming weeks. What are your plans? While things do slow down a bit during the summer, they never stop completely, and NWDSA has a few things going on we would like to make you aware of.

• Buddy Walk Committee
At first glance, this is more about the fall than the summer, but in order to make another great Buddy Walk happen, we need your help. Meetings will take place twice a month until September, and the committee is a great chance to get more involved in the work of the NWDSA. Join us on the 2nd and 4th Tuesday of every month for a fun evening of planning and strategizing. The first meeting will take place at the NWDSA Resourcefulness Center, 6826 NE Glisan St. Portland, OR 97213, on Tuesday, June 23rd, from 6:30 - 8:00 PM. Light dinner will be served. To join the committee, or discuss other Buddy Walk Volunteer options, please contact Kyle at (503) 238-0522.

• James Bond Casino Night Benefit at Tony Starlight’s
Join us on July 9th at Tony Starlight’s Supper Club and Lounge (3728 NE Sandy Blvd Portland, OR 97232) for a fun night of laughter and good cheer. Advisory Board member Sherry Kucera and her husband Brett are hosting this event, and proceeds from the evening will go to support the NWDSA summer social, as well as continued new parent outreach work. Hope you can make it! For more info about Tony Starlight’s, check out www.tonystarlight.com.

• Summer Social
The date has been set! More information about the summer social on August 8th will be coming soon. Join us at Old McDonalds Farm http://www.oldmcdonaldsfarm.org/aboutUs/directions.htm for a Saturday full of fun. There will be music, food, animals to enjoy and activities to do. If you would like to be part of the social committee or volunteer, please contact Jamie Burch @ (503) 238-0522.

• NWDSA Resourcefulness Center Open Drop-in Opportunities
We would like to invite you to visit our office to check out our resources, meet other families, and share ideas. We will be hosting drop-in hours every Thursday afternoon from 12:30-2:30 for families of kids with Down syndrome. We will also host monthly cross-disability, inclusion themed drop-in evenings on the fourth Wednesday of every month, from 5:30-7:30 PM. Light refreshments will be served, and we hope you can join us to get to know the community, ask questions, and share stories.

• Oregon Disability MegaConference
The 2009 Oregon Disability MegaConference is taking place right here in Portland, on June 25-27, 2009 at the Sheraton Portland Airport Hotel. We wanted to make sure you all have a chance to learn more about this opportunity. Keynote speaker Norm Kunc is a wonderful speaker, and it is always great to hear his inspiring words on inclusion and a successful life. There are other great sessions planned as well, and the Registration Deadline has been extended to June 20, 2009.
Also, stipends still remain for families that live in the Metro area (Multnomah,Clackamas, Washington Counties), with kids ages birth to 18 years old.
For questions, stipend information, or special accommodations, email Angie Solisat angie.solis@arcoregon.org or call (toll free) 1-877-581-2726 or in Salem 503-581-2726.

• Parks and Rec
And last but not least, as you are planning your summer fun this year, don’t forget about the great inclusion programs available through Parks and Rec. Both Portland and Vancouver-Clark Parks and Rec programs offer inclusion specialists free of charge to ensure that all kids can participate fully in all program activities. For more information on Portland programs, visit http://www.portlandonline.com/parks/index.cfm?c=39830, and for info on the Clark County programs, visit http://www.cityofvancouver.us/parks-recreation/recreation/disabled/index.htm

Enjoy the summer weather!

Filed under Uncategorized

Save The Date!

April 18, 2009
8:30-5:30 PM
Ambridge Event Center
1333 NE MLK Blvd
Portland, Oregon 97232

Fourth Annual Cross-Disability Inclusion Conference

presented by NWDSA in partnership with PSU & MESD

Tools, networking & inspiration for parents and professionals committed to inclusive education opportunities for children (birth - 21) with disabilities.

Keynote Speakers:

David Pitonyak

Janice Fialka

More than 14 dynamic sessions to choose from. Check back soon for online registration and session abstracts. Download flyer by clicking the link below and help spread the word!

2009 ABI Conference save the date

2009 ABI Conference abstracts and bios

2009 ABI Conference registration form

Filed under Uncategorized

The NWDSA invites parents and professionals to the upcoming Reciprocal Learning Community to take place on Saturday, December 6, 2008 from 8:45 AM – 1 PM at the Valley Community Presbyterian Church in Portland, Oregon. The topics of the RLC focus on children with Down syndrome, from birth to age five.

Putting the Family back in the IFSP, and the Individual into the IEP

Each family is unique and has its own interests and dreams. This doesn’t change when the family includes a child with a disability. Explore your wishes for your child and your vision for your family, and then create a path with these ideas at the center. Draw from this to bring your voice to the process that happens at Individual Family Service Plan and Individual Education Program meetings.

Early Intervention and the services you receive are organized around reaching the goals set in your meetings. Learn how to be a clear communicator and good partner. Explore ideas on how to use goals and therapy to achieve more balance in your family. Create clear-cut tools that show your child’s strengths and your family’s vision for the future.

Parents – get comfortable being in the driver’s seat when writing goals to ensure that your child’s IFSP and IEP reflects your family and what you want for your child. Staff – learn how to help parents be more active in the process of goal writing. Both parents and staff can achieve more by working together and maximizing the power of partnership.

Please bring a photo of your family and your child for the make and take portion of the session.

Presenters include: Ruth Falco, PhD, PSU. Dave Andrews, SLP, Supervisor, MECP. Dolores McNee Disabilities Coordinator, Community Action Head Start. Joan Medlen, RD, LD, Director, Disability Compass and author of The Down Syndrome Nutrition Handbook.

There is no cost for this session and we always welcome new families!

• Saturday December 6, 2008 8:45 am until 1 pm
• Valley Community Presbyterian Church 8060 SW Brentwood Street, Portland, OR 97225 503-292-3537
• Therapist-run Childcare & Spanish Translation Available
• Morning Beverages & Snack and Family Lunch Provided
• Additional Speakers, Family Story, Resource Table and NWDSA Updates
• Connect with other families and network

Please R.S.V.P. to Jen Brandse at (503) 645-0890 or jennabreeze@verizon.net before Wednesday, December 3. We need to know: how many adults are attending (and their names); how many children for childcare (and their names and ages); and your phone number. As always, childcare may fill up so please register early. Please let us know if you need Spanish Translation services. Para comunicarse en español, llame a Maria O’Harra al 971-570-0942

Download PDF of flyer:
RLC flyer 12.06.08

Filed under Events

Northwest Down Syndrome Association Announces New Executive Director

The Northwest Down Syndrome Association (NWDSA) is pleased to announce that Angela Jarvis-Holland has been appointed Executive Director, effective September 1, 2008. Ms. Jarvis-Holland has served on the Board of Directors of the NWDSA since 2002, and has been a driving force behind a variety of innovative projects. She most recently served as the Chair of Education and Advocacy.Ms. Jarvis-Holland brings to her new role as Executive Director many years of experience in leadership roles within the social services community. In her native England, Ms. Jarvis-Holland worked for several years as a public health nurse and community educator, and directed programs working with at-risk teens. After moving to the United States in 1992, she worked in social services for a number of years, including at the Parry Center and later at the Kelly Community House, where she directed a literacy based school and family support project.

In addition to her leadership experience, Ms. Jarvis-Holland holds several degrees, including a nursing degree, a double major in sociology and psychology, and a vocational master’s degree in youth and community studies and non-profit management. She has established an extensive network in the disability and healthcare community around the Northwest, and completed the Oregon Partners in Policy Making training in 2004.

While with the NWDSA, Ms. Jarvis-Holland developed the Reciprocal Learning Community, a parent-professional education project, and co-founded the All Born “In” inclusion conference. Ms. Jarvis-Holland lives in Southeast Portland with her husband and their two sons, Quinn, 14 and Daniel, 9. She has said that her two sons, and the desire to give them equal opportunities to live a rich, full life, have provided her with the inspiration to dedicate herself to advocacy work. As the NWDSA continues to grow and expand, it is exciting to be able to offer this position to such a highly qualified individual who has a proven track record as an advocate for all children and families.

NWDSA Board of Directors

Filed under Letters from the Board

As an organization that is close to the issue, we have been following with interest the press activity in the days since Sarah Palin’s introductory speech. We have a broad list of contacts in the local and national disability community, as well as excellent resources and a deep understanding of the testing issues, as we have been working on issues around testing for the last two years.

We recently held a listening session with U.S. Congresswoman Cathy McMorris Rodgers from Spokane, where we presented parent stories, a literature review that we commissioned from a PSU student investigating attitudes in the medical community around genetic testing, and a powerful presentation by a genetic counselor at OHSU. We also had a self-advocate speak about her life and experiences as a young person with Down syndrome.

We have strong links in the local medical community, and we have a draft proposal under consideration at OHSU and Providence to do training session around these issues. We are a credible, local organization who values our ties with the broader community, and we have done a lot of thinking about the issues that are on the airwaves these days. It is inevitable in circumstances like this that misinformation circulates, especially on internet forums. We rely on the local media for strong, unbiased reporting on the issues, and hope that we can become a resource to tackle these complicated ideas.

Down syndrome does not discriminate in the lives it touches, so all these issues are propelled into the non-partisan arena. People of all political persuasions are faced with these decisions every day, and as a group we aim to be neutral and non-partisan in our positions.

Thank you for your time,
The NWDSA Board of Directors.

“The only thing that interferes with my learning is my education.” - Albert Einstein

For others recent perspectives on this issue follow the links below:

• http://www.patriciaebauer.com/category/down-syndrome/
• http://www.cbsnews.com/stories/2008/09/10/eveningnews/main4437797.shtml
• http://bbandbohmy.blogspot.com/2008/09/katie-couric-on-down-syndrome-i-demand.html

Filed under Letters from the Board