Spring 2018 Special Times

Special Times

Inside This Issue Letter from the Executive Director Volunteer Request Unity and Courage Among Us A Son with Down Syndrome: One Dad’s Perspective Parent Group Listing

It is the mission of the Down Syndrome Association of Minnesota to empower individuals and families, to create community and celebrate the abilities of people with Down syndrome.

Board of Directors

Officers Brandon Yerxa, President Dan Galles Vice President Billy Weber, Treasurer Laura Lee, Secretary Directors Heather Bradley Allison Bass Carrie Delaney Jennifer Elston-Brondell Jill Harrison Karen Lehner Suzy Lindeberg Toni Malone Camilo Mejia

Special Times

Managing Editor, Kathleen Forney

Staff

Kathleen Forney, Executive Director Tracy Hafeman Annie Hines Catherine McDonnell-Forney Marcy Rede

Down Syndrome Association of Minnesota 656 Transfer Road St. Paul, MN 55114 Phone: (651) 603-0720 or (800) 511-3696 Fax: 651-603-0726 Website: www.dsamn.org Email: dsamn@dsamn.org

On the cover:

One of DSAM’s amazing parent groups. Find one by you on page 6

Inset:

World Down Syndrome Day Party!

Special Times does not promote or recommend any therapy, treatment, educational setting, etc. We will not espouse any particular political or religious view. Individuals or organizations referred to do not necessarily endorse this publication or its editor. The editor reserves the right to make corrections as appropriate and in accord with established editorial practice in material submitted for publication.

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You can make a difference by helping support the Down Syndrome of Minnesota’s programs and services.

Kathleen Forney Executive Director

Every contribution, big or small, whether financial or the gift of time, helps us support individuals with Down syndrome and their families here in Minnesota and neighboring states.

Are you aware that 65% of Fortune 500 companies offer matching gift programs? This program may provide you with an easy way to double and sometimes triple your donations to the Association. Many companies afford employees this opportunity through a matching gift program which matches any charitable donation or volunteer hours made by their employees as part of their own corporate philanthropy. To find out if your company offers such a program, check with your Human Resources Department and request a matching gift form or your employer may have an online application process. If a form is required, send it in and the Association will handle the rest.

In 2017, the Association received over $10,000 in matching donations; gifts which positively impacted the programs and services offered to our families.

Possibly your company has an employee giving program? Unlike matching gift programs, the employee giving programs are an opportunity for employees to pledge a specific amount out of each paycheck to the Association. It’s easy and breaks up an annual gift you might be considering into what may be more manageable small contributions. Employee giving program donations here at DSAM range from $1.00/paycheck to $50/paycheck and in 2017 amounted to over $27,000!

Sustaining donations are, in essence, programmed giving wherein donors define an amount they wish to give to the Association on a regular, recurring basis. You may choose to establish an annual or a monthly donation gift. Once set up, the Association is provided with a donation that is automatically deducted from your checking or savings accounts. We are very grateful to the over more than 100 friends and families who are already sustaining donors to DSAM. Over the years, dozens of families have donated to the Association through event giving. Folks have requested donations to DSAM in lieu of wedding or birthday gifts, held golf outings, motorcycle rides, ice cream socials and more. If this sort of opportunity is of interest, please contact the office and we will help you work out the details.

You can also support DSAM through a gift of your time. We need volunteers to sustain existing programs and events and to expand new opportunities. Follow this link www.dsamn.org/support-us/volunteer/ to let us know which events might interest you. You can make a difference in the lives of individuals with Down syndrome in our community.

If you’d like to talk about any of these opportunities, or if you have any questions, please connect with via email at kathleen@dsamn.org or by phone 651-603-0720.

Have a great summer!

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Spring 2018

Want to volunteer to work with a fabulous DSAM committee?

Kathleen Forney

Our Step Up Walk Committee is charged with putting on one of the largest annual events in the Association.

They are a hard working but fun loving group of volunteers (supported by yours truly on staff) who handle everything from negotiations with the city and all the departments that must clear the plans for the walk, food vendors, entertainment, volunteers, etc.

Terri Yira has been chairing our Volunteer sub-committee for the past few years and is looking for a volunteer (or two) who would like to work with her this year.

Interested? You can reach out to me at kathleen@ dsamn.org and I can hopefully answer any questions or forward your questions or interest on to Terri.

Our committee meets monthly beginning in January under the leadership of John Ginther, Step Up Walk Committee Chair.

John will be retiring as chair after this year’s walk as are a few other committee members (they have been doing this for 10+ years so while it is hard to say goodbye to them as committee members, it is well deserved).

Save the Date!

September 23rd, 2018 Join us at beautiful Como Park in St. Paul for our 21st Annual Step Up for Down Syndrome Walk!

Watch your email, mailbox and social media at the end of June for registration information!

If you might be interested in working on this committee, I’d love to hear from you. You can reach me at 651-603-0720 or kathleen@dsamn.org

I have loved working on the walk committee.

We are a hardworking dedicated group striving to put on the best walk (celebration) and also raise money for the continued support of programs and services for those we love.

From being on this committee I have met so many wonderful people. Even though we work hard we still have fun and laugh at every meeting. It has been very rewarding.

-Karen Lehner Our friend and coworker Kate Pickford retired in January. Kate worked for DSAM for 11 years as the Administrative Assistant - she kept us all sorted out!

You can find Kate enjoying her retirement garden and as a U of MN Extenstion Master Gardener!

We miss you Kate!

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When someone decides to get a tattoo, there usually is a meaning behind it followed up with a story. So, there is no surprise that “why did you get it “is a common question my fellow “Lucky Few” moms and I are asked about our tattoo.

A few months ago, some photos of Moms that have children with Down syndrome went viral. The photos all had moms showing their new tattoos with the hashtag “The Lucky Few”.

You’re drawn to wanting to know why and what makes them “lucky”.

The “Lucky Few” is actually in reference to a popular book about Down syndrome. Of course we, as moms of children with Down syndrome, have taken those words and transformed them into our own meaning and our own stories to tell. With that being told, the movement “the Lucky Few” was born and tattoo artists around the country started inking moms with three pointing arrows. The arrows themselves represent so many things. It symbolizes the third copy of the 21st chromosome. I guess you could say that would be the educational meaning, the emotional interpretation allows each of us to inform others of our own definition of the three arrows.

So back to when someone asks why did I get a tattoo and what is the meaning, it is at that moment I am able to tell my story.

The “Lucky Few” tattoo allows me to be connected to the many groups of Moms that are raising children with Down syndrome. It’s my badge of honor. It exemplifies that I feel lucky to be a part of this “club” and I feel proud to wear my badge. The tattoo itself is simple and minimal but represents how we rise up and move forward”. We fly highest after we have been pulled back and stretched, sometimes even more than we ever thought possible or could think we can bear.”

When I think about my tattoo, it reminds me that this journey has brought me together with amazing, brave, smart, and beautiful moms that all just want to teach the world that just like all of our three arrows and just like our incredible kids, we are more alike than we are different .

Grateful for being allowed to be “The Lucky Few “

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real baby food. I got to work on my patience while making doctor appointments, and going to all his appointments. When is he going to start to talk (he has a lot to say now), walk (always has to be moving ), run and play with others (loves riding his bike and gym class). As he gets older he loves to do household and yard work chores, even when they don’t need to be done (well mom and dad don’t think they need to be done).

A Son With Down Syndrome One Dad’s Prospective

By Mark Lehner

Dad’s will think that becoming a dad is the best thing that could ever happen to them…then when your child is born and the doctor tell’s you and your wife your child has Down syndrome…It doesn’t change the facts you are a dad, and it is the best thing that could ever happen.

Being a dad with a son that has Down syndrome has taught me:

EXTROVERT: Jacob started early teaching me that strangers are not all bad. When Jacob was still in a stroller, people would come up to us and say hello and would comment that they have a child, sibling, or relative with Down syndrome (comments would be that we are lucky, blessed, they are a joy). As he has gotten older Jacob sees the need to talk to anyone with a baby, dog, wheelchair, and even motorcycles. We have talked and met a lot of nice people this way.

LOVE: Jacob will try to comfort anyone who is crying or hurt (yes, most of the time strangers). Jacob tells me he loves me every single day probably a 100 times, but I think every dad knows…

JACOB (son or daughter ): I love you dad ME(dad): I love you too.

MOM: What about me.

JACOB(son or daughter): I love you MORE.

PATIENCE: It took a longer for Jacob to eat and drink

Upcoming Events

Welcome

DSAM Member Picnic Join us on July 8th from 2-5 PM at a new location Rosland Park in Edina. This is a fun event for the whole family! Watch your mail for more details.

Kara Anderson Syada Zehra Myrtha Blanc Gabriella Hernandez Jody and Nate Shellito Nick and Susie Walk Stacy Aldrich and Kyle Samuelson Anethea and Hugh Newechek Addie Michlitsch Erin and Christopher Blood Kim Grinnen and Dennis Posey Tony & Emily Hartman Veronica Valazques Barron Erin and Tina Kastle Wendy and Sonny Kommany Sarita Dangeti Paul Novak Ann Aubitz John Reifler and Heather Missad

Supper Club - Picnic Meals Open to self 14+, visit www.dsamn.org/supperclub.

Dates: June 26, July 24 and August 14 Youth & Adult Conference Adult Matters Conference September 8th Normandale Community College Step Up for Down Syndrome Walk This awesome annual event will be held on September 23rd at beautiful Como Park! www.dsamn.org/walk

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Parent Groups

Parent networking groups provide information to parents and grandparents of children with Down syndrome. New members are always welcome. These groups offer a safe place to share the joys and challenges of raising a child with Down syndrome. You network with other families who have a child with Down syndrome, learn and share information and ideas. Please contact Tracy Hafeman at (651) 603-0720 or (800) 511-3696 for more information on existing parent groups or to spark a new parent group in your area.

Apple Valley – South of the River Group

Third Sunday, 5-7 pm, Monthly except no July or December meeting Shepherd of the Valley Church 12650 Johnny Cake Ridge Rd., Apple Valley Erin Statz & Jodi Aschoft SouthoftheRiver@dsamn.org RSVP requested. Childcare and meal provided.

Facebook: South of the River Down Syndrome Support Group In collaboration with Arc Greater Twin Cities

4th Monday, 6-8 pm, Sept.-May Kennedy Elementary School, 1175 Tyler St, Hastings, MN Kaiya Witt & Chris Call Hastings@dsamn.org Childcare provided Facebook: Hastings Down Syndrome Group

Mankato

Please contact Courtney for specific meeting times and topics Pediatric Therapy Services 150 St. Andrews Court, Suite 310, Mankato, MN Courtney Kruse courtneykruse@gmail.com Facebook: Down Syndrome Support Group of Mankato Childcare provided.

Bemidji and Surrounding Communities

Meeting Year Around – Summertime Social Gatherings Please contact the group facilitator for specific meeting times and locations.

Children are welcome.

Sarah Reiners sreiners77@gmail.com Facebook Group: Northern Minnesota Special Kids United

Maple Grove – 8 Years and Older

Please contact Lisa for specific meeting times and topics Lisa Bartsch ljbartsch@gmail.com

Chaska Parent Group

2nd Thursday, 6:30-8 pm, Sept.-May St. John’s Lutheran Church 300 4th Street E., Chaska, MN 55318 Jeri Haft coo_coo69@hotmail.com RSVP requested. In collaboration with Arc Greater Twin Cities

Maple Grove – Birth to 8 Year olds

1st Monday, 6:00-7:30 pm, Sept.-May St Joseph the Worker Catholic Church 7180 Hemlock Lane North, Maple Grove, MN Tiffany Yerxa tiffany.yerxa@gmail.com Heidi & Billy Weber heidi.r.weber@gmail.com Childcare provided Facebook: Maple Grove Parent Group, Down Syndrome Assoc of MN

Chisago Lakes Down Syndrome Family Group

3rd Tuesday, 6:00 – 7:20 pm Every other month starting in Sept.

2016 Lakes Free Church 29620 Olinda Trail, Lindstrom, MN 55045 Kristi Hinsch & Tina Letourneau ChisagoLakes@dsamn.org Facebook: Chisago Lakes Down Syndrome Family Group

Mid-Minnesota Down Syndrome Community

Meetings held in collaboration with the Arc Midstate Meetings held at Hope Covenant Church, St. Cloud Please contact facilitator for meeting dates and times Jessica Watson & Kelly Dirkes MidMinnesota@dsamn.org Childcare provided

Duluth – Down Up North Parent Group

Please contact the group facilitator for specific meeting times and locations.

Heather Krohn heather.n.krohn@gmail.com Website: DownUpNorth.com Facebook: Down Up North Parent Group

Elk River Parent Group

Hastings Down Syndrome Connections

Minneapolis

2nd Tuesdays Check www.nwspark.com or contact facilitator for time and location details Heather Coudron (763)228-0721 or woodland132@yahoo.com RSVP requested. No Childcare provided.

In collaboration with NW S.P.A.R.K. Website: www.nwspark.com and Facebook group: NW SPARK (Special Parents and Remarkable Kids) andNWSPARK Down Syndrome Parent Group

4th Sunday, 5:00-6:30, January-May Gigi’s Playhouse, 4740 Park Glen Rd, St Louis Park Lauren Anderson & Ashley Olthoff Minneapolis@dsamn.org Facebook: Minneapolis Down Syndrome Family Group

Minnesota Moms (Children birth to 5, 5-12 & 12-18) Primarily an online community. Please contact a group facilitator for specific meeting times and locations.

Heather Kamia (St. Paul) MinnesotaMoms@dsamn.org Facebook: Minnesota Moms with children who have Down syndrome (five and under)

Grandparent Group – Twin Cities 3rd Thursday, 9:00 – 11:00 am Perkins, 4201 W 78th St, Bloomington Jerry Cooper (952)432-9769

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North Metro Down Syndrome Parent Group

Meeting the 2nd Monday of each month (Sep-May), 6:00-8:00 Christ Lutheran Church - 641 89th Ave NE, Blaine, MN Carrie & Rich Delaney NorthMetro@dsamn.org

St. Paul Families

Facilitator needed. If you’re interested, please contact Tracy at Tracy@dsamn.org

South Central Minnesota Family Group Nicole Caporale nwcaporate@gmail.com Not currently active

Southeast Minnesota

Contact Nicole for meeting times Nicole Kunkel SouthEastMN@dsamn.org Facebook Group: SE Minnesota Down Syndrome Parent/Grandparent Network

Southwest Minnesota Parent Group

Meeting Year Around Please contact the group facilitator for specific meeting times and locations.

Kim Weidert & Shelli DeGroot SouthWestMN@dsamn.org Facebook Community: Designer Genes Down Syndrome Network

Stillwater Area Parent Networking Group

2nd Monday, 6:15-8 pm. Sept-May December and Summer Picnic Dates to be determined Stillwater ECFE 1111 Holcombe St., Stillwater, MN Angela Mann, Shere Krusemark and Mary Milliagn Stillwater@dsamn.org Facebook Group: Stillwater, MN Down Syndrome Family Support Group RSVP requested. Childcare provided.

Wright County Parent Networking Group

Quarterly Family Social Events Contact Sheri or Penny for event dates and locations Sheri Jorgensen sheri.jorgensen@co.wright.mn.us Penny Kauffman pckauffman@comcast.net Facebook group: Wright County Minnesota Down Syndrome Support Group

Volunteers needed for iCan Bike Camp! August 6-10th Want to help people with disabilities learn to ride a bike independently? The Twin Cities iCan Shine Bike Camp is looking for volunteers to work directly with riders – volunteers make this camp possible!

We need 100 spotters for the week to walk/jog/run alongside a rider as they are learning to ride a bike using iCan Shine’s special adaptive equipment. The sessions run 75 minutes (with short breaks) for 5 days Monday through Friday. You will provide encouragement and physical support, as needed. This is a great experience for individuals and for groups looking for team building!

Bike Camp will be held August 6-10th, 2018 (with orientation on the 5th) at Hamline University – Walker Fieldhouse with sessions starting at 8:30 am and running until 5:00 pm. Please call/email Marcy@ dsamn.org for more information, or you can sign up directly here: https://www.dsamn.org/icanvolunteer If you have any other ideas of individuals or groups who might be interested in volunteering - please let us know. It’s always more fun to volunteer with friends! Volunteers need to be at least 15 yrs old, and, obviously, they need to be able to keep up with our riders.

The riders depend on YOU to help them get up on two wheels - they can’t do it without you!

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Special Times is a benefit of your annual membership in the Down Syndrome Association of Minnesota. To join or renew today, visit www.dsamn.org or call (651) 603-0720

656 Transfer Road, Saint Paul, Minnesota 55114 (651) 603-0720 • (800) 511-3696 www.dsamn.org

Special Times: A newsletter published

throughout the year by the Down Syndrome Association of Minnesota.

RSVP: www.dsamn.org/picnic