family footnotes w i n t e r 2 0 1 7

Family Care and IRIS 2018 Beginning in 2018 all individuals 18 and older will transition to Family Care or IRIS from the CLTS or CIP Waiver. Some information has already been provided to families on this transition, and we encourage parents to continue to learn as much as possible during the upcoming months. Living Our Visions (LOV-Dane) and the ARC Dane County are co-hosting a series of learning opportunities to ensure individuals with disabilities and their families have access to understandable and accurate information on the various changes. A few learning sessions have already been held, with two more scheduled for Thursday, February 23, and Thursday, March 30.

You can receive the latest event details and information by signing up for LOV Dane’s email list at http://lovdane.org/emailsignup/ or visit www.lovdane.org.

Videos from previous events and links to additional resources can be located at http://lovdane.org/projects/family-careiris-transition.

FSRC was the proud recipient of the 2016 Steve Jones Memorial Award sponsored by The Capital Times Kids Fund. The award is given each year to recognize an “outstanding program in Dane County that exemplifies working with youth”. We are extremely appreciative of this recognition.

Workshop on Family Care/IRIS in Dane County: Taking Action and Exploring Advocacy Opportunities Hosted by Dane County Developmental Disabilities Coalition and Dane Pathfinders

WHEN: Feb. 15, 3 sessions of same workshop to choose from: 10-11:30, 1-2:30, or 5-6:30

WHAT: Join together with parents, families, adults with disabilities, direct support workers and others to discuss questions about what Family Care/IRIS changes will mean for Dane County, and what you can do to help shape how the program is implemented in Dane County. This is the first workshop in a series.

WHERE: Coliseum Bar, 232 Olin Avenue, Madison

HOW TO REGISTER: Each session limited to 25 participants. Must pre-register by emailing Info@WhatDoesFamilyCareMeanForDaneCounty.com and include your name, phone #, affiliation (parent, support worker, guardian, etc.) and specific session you wish to attend. You will receive email confirmation.

Family Support & Resource Center

N E W S L E T T E R

W W W . F S R C D A N E . O R G

Keeping Dane County families together by providing resources to support and care for children with significant disabilities at home

Agency News

Achieving Collaborative Treatment AFCH Pediatric Complex Care Clinic Bob & Isabel Agasie Cathy & Michael Baer Raymond Boerke Jason Bongle Charlene Breunig Amanda Brezenski Benjamin Buscher Meredith & Tom Degen Nathan & Louise Elbaum Janet Estervig Grace Frudden Skye Gamble Kenneth & Mary Gehring Ken & Jeannette Golden

Bill Schwab & Leslie Grant Dianne Greenley Eugene Grunewald Jr. Cheryl Hanson Harry Zook Charitable Trust Lisa & Thomas Hay Dr. Kenneth Herrmann Peter Huettl Bernice Hughes Dave Benton & Pat Kelly John Hensey & Jo Ellen Kilkenny Doris Knaack Ron & Deborah Konkol Doris Kontos Joe Schmitt & Rena Kornblum Eric & Molly Linn-Miller

Kevin Menningen Tara & Brian Meunier Ward & Peg Olsen Debra Peterson Phoebe R & John D Lewis Foundation Karen & Steele Schilling Eliana Schwab Ken & Gail Simmons Mary Sykes MaiSee Thao Amelia & Trent Thompson Unity Church of Madison West Bend Mutual Insurance Company, Recognition of Rob Maksimuk Terry Geurkink & Sally Wilmeth David Witte

Alliant Energy Bryan & Kendra Atkinson William, Evelyn & Patti Becker Sarah Bennett Deb Biechler Tami Jackson & Nathan Brazy Marcie Brost Capitol Lakes CapSpecialty Hilary Carroll Emmie Coan Bailey Fedler Kari & Andy Fortune Joni Goldman Megan Henze

Terri Johnson Jeanine & Mark Krueger Angie Maniaci Sharon McHugh Debbie & Joe Nichols Katy & Paul Nichols Pam Staab Chris & Randy Steeno Roberta Stolt MaiSee Thao Emily Leibold & Jacob Trowbridge Unity Church of Madison Andrea Vogds Wisconsin Bankers Association

A big thank you to our 2016 Donors for their support! We couldn’t do it without you!

Tom & Nancy Alar Peter Cavi Molly & Christopher Cooney Thomas Cooney Heather & Jason Cooper Dreamweavers Diane Fett Pamela Garman Joseph Mathers & Meredith Green Helen Hartman Ben Sims & Michelle Havron Sims Jay Hazen, Dentistry for Madison George & Melinda Heathcote Scott Simmons & Elizabeth Hecht Cecelia Hempel

Bob Kann & Caroline Hoffman Rita & Ernest Hohlstein Robin & Scott Hubbard-Van Stelle InControl-Wisconsin Lyle Updike & Wendy Kaplan James Gill & Susan Latton Mary & Ronald Locast Samuel Savage & Nora Manheim Sally Mather & Associates Marla & Kenneth McKenzie Cora Lee Mooney Colleen Moss Arie & Beth Moszkowicz Stacy Opsal Mary & Edward Peters

Carrie Pomije Michael & Lisa Pugh Deborah Rathermel Celeste Robins Joseph Krebs & Erin Rodell Lynn Roethe Heidi & Dan Rossiter Lynn & Thomas Sankey Heidi Sonnenburg Jeffrey & Sheryl Spitzer-Resnick Elizabeth & Fred Swanson Beth Swedeen Alan Ginsberg & Linda Tuchman-Ginsberg Christine Williamson Witt Beth-May & Michael Wroblewski

In Memory of William Simmons

Holiday Donors In Kind Contributors Allison Smith Foundation American Girl AT&T Telecom Pioneers Culligan Water Treatment Gaylord Catering The Great Dane Pub & Brewing Co. HuHot Mongolian Grill Jane Kinney, AKA Ladybug the Clown Molly Linn-Miller Living Christ Church Quilting Group Logan’s Heart and Smiles Madison Concourse Hotel Paint My Face Rejuvenations Ryan Signs Schoep’s Ice Cream Silly Yak Bakerty

Agency News

Hello everybody! I am the newest member of the FSRC staff team! I previously worked for twelve years providing parent education and case management to parents and children with and without disabilities. I was born and raised in Madison and my parents still live here as well. I attended the University of Wisconsin-Stevens Point where I met my husband. We have a son who is 18 years old. In my free time I enjoy reading, watching movies, trying new restaurants and going to Drums on Parade when it comes to town. I am excited to meet and partner with the families of Family Support and Resource Center! Heather

Family Support & Resource Center Grupo de Apoyo para Familias*

Acompáñenos al grupo de padres y proveedores de cuidado de niños (nacimiento a 21 años) con necesidades especiales. Este grupo le dará oportunidad de conocer otros padres, conocer de recursos y programas, y compartir su experiencia como padre de hijos con necesidades especiales. Empiece el año nuevo conociendo otras familias y compartiendo sus experiencias.

Los próximos grupos se llevaran al cabo los sábados: 4 de marzo y 1 de abril de 9:30-11:30am

En Centro Hispano ubicado en 810 W. Badger Rd. Preguntas? Ideas? Favor de ponerse en contacto con Celsa Rodriguez por correo electrónico (crodriguez@fsrcdane.org) o llamando al (608) 237-7631. Favor de apuntarse con Celsa. *Por el momento este grupo es solo para familias participando en el programa de FSRC.

Holiday Project

It was another successful year!

175 children and families had a brighter holiday because of our wonderful donors.

SAVE THE DATE! FSRC’s Annual Picnic is Saturday, August 26th, at McKee Farms Park!

Keeping Dane County families together by providing resources to support and care for children with significant disabilities at home

FSRC Board of Directors Joe Herr, President Paola Perez, Vice President Teri Smith, Secretary Isabel Agasie Lisa Hoeme Alicia Stay Dan Woodson FSRC Administrative Staff Heidi Rossiter, Executive Director Karin Finken, Business Manager Jennifer Babb, Office Manager Kari Mork, FSP Assistant Director Katie Janik, Administrative Assistant Liz Fok, Administrative Support Family Support Program Josh Davidson Sara Frazier Ginger Ganser Jarrid Heim Glenda Industrious Ann Junkin Lauren Meyers Katy Nichols Amy Polka Kristi Ratley Tracee Rockow-Vivier

Celsa Rodriguez Jessica Swan MaiSee Thao Kim Walling Kaela Winter Heather Wittwer Kevin Yanke Student Intern Megan Miller

Agency News

Heartland Farm Sanctuary Summer Camp 2017 registration opens in February! Heartland’s popular summer day camp is back for the 2017 season. Registration will open on February 13th. This year they are offering 11 weeks of camp for youth ages 8-14. Camp will start the week of June 12th.

Synergy Dance Academy presents Chance to Dance

This “drop-in” class provides children with developmental differences an opportunity to express themselves through music and movement. Classes offered twice a month on Saturdays from 9-10 am. Call 608-203-8539 or visit SynergyDanceMadison.com/Chance-Dance for more info.

Keeping Dane County families together by providing resources to support and care for children with significant disabilities at home

PACE Forum: Parent and Children Education Sponsored by ARC Dane

Tuesday, February 21 at 6pm: Bruce Barge “Financial Planning for Families with Children Under 18”

Thursday, March 16 at 6pm: Ron Konkol “Social Security Benefits & Resources”

Thursday, April 27th at 6pm: Bruce Barge “Financial Planning for Families with Individuals 18 & Older”

Tuesday, June 13 at 6pm: Laura Skilton Verhoff “Special Needs Trusts, Wills and Powers of Attorney”

Crowne Plaza Hotel - 4402 E. Washington Ave, Madison

Preregistration Required. Call 608-442-5555 or email Info@EpilepsyWisconsin.org

Wings for Autism On October 22, 2016, the Appleton Airport offered an event for individuals with disabilities and their families called Wings for Autism®. This program, sponsored by the ARC of the United States, helps alleviate some of the stress and anxiety felt by families when traveling with their family member with autism or other disabilities. As stated on their website: “This program provides families with the opportunity to participate in the entire airport experience by practicing entering the airport, obtaining boarding passes, going through security, and boarding an airplane. Wings for Autism® also gives airport, airline, TSA professionals and other personnel the opportunity to observe, interact, and deliver their services in a structured learning environment. Since last year, nearly a thousand families from all over the country have taken part in these events.”

Aditya and his parents attended the program this past year in Appleton, and found it to be a wonderful experience. Aditya’s parents have not yet gone through the process of air travel with Aditya, and this opportunity allowed them to practice airport routines and find out how their son would react on an airplane, in a more relaxed simulated environment. Their experience was overall positive and they were happy to have participated. The most challenging part of the activity involved bringing food onto the plane. Aditya requires a special diet, and they were not allowed to bring liquids aboard, larger than 100 milliliters, which precluded his soup. Despite that one issue, they feel better prepared and more confident for future air travel with Aditya.

Saturday Science Town Center of the Discovery Building

330 N. Orchard St, Madison 53715 608-316-4300

This series features a different science topic each month with hands-on,

interactive stations.

1st Saturday of each month 10am-12pm

Kids In The Rotunda Overture Center

201 State St, Madison 53703 608-258-4141

This series offers a variety of entertainment for children ages 9 and

younger and their families.

Saturdays through April 29th 9:30am, 11am, 1pm

*1pm sign language interpreted

DreamBank Family Events DreamBank

1 N. Pinckney St, Madison 53703

This series includes play dates, story time, celebrations, music, magic, and more! www.DreamFearlessly.com

Variety of dates and times *Must register in advance

Family Night Madison Children’s Museum

100 N. Hamilton St, Madison 53703 608-256-6445

The whole community is invited to enjoy the museum for free.

1st Wednesday night of each month 5-8pm

Children’s Theatre Events Waisman Center

1500 Highland Ave, Madison 53705 608-263-5837

Feb. 12th: Wildlife Fun with David Stokes Mar. 12th: Sounds Like Science with Mad Science

Apr. 9th: WWW.Oz with Playtime Productions

Admission: Adults $2, Children $1 All shows start at 1pm & are sign interpreted.

Winter Concert Series Olbrich Botanical Gardens

3330 Atwood Ave, Madison 53704 608-246-4550

Feb. 19th: Jodi Jean Amble & Doug Brown (Jazz Duo) Feb. 26th: Gator Bait (New Orleans Style Boogie)

Mar. 5th: The Krause Family Band (Folk/Americana) Mar. 12th: Midnight Voices (Female a cappella group)

Mar. 19th: Tani Diakite & the Afrofunkstars (Wasulu Music)

Mar. 26th: Dimensions In Sound (Classic Big Band)

Admission: $2 per person All shows are from 2-3pm.

Warner Family Fun Nights Warner Park Community Recreation Center

1625 Northport Dr, Madison 53704 608-245-3690

Activities include: gymnasium fun (bouncy house, sports, games), family fitness classes, Fit2Go van, movies, drop-in art & pottery projects, game room

(pool, ping pong, foosball, air hockey), and child care room for young kids. New theme each month.

Kids 11 & under must be accompanied by adult Friday, 2/10, 3/10, 4/14, 5/12, 6/9

Admission: $5 per family 5:30-8:30pm

Keeping Dane County families together by providing resources to support and care for children with significant disabilities at home

Agency & Community News

Exploring Art Night! It’s TIME to CELEBRATE WINTER

FREE art class for Family Support & Resource Center families

WHAT: Choose from several winter-themed art activities and explore a variety

of art materials such as paint, colored clay, tissue paper, and 3-D items WHO: ALL ages and abilities are welcome! Bring a friend or family member!

WHEN: Thursday, February 23, 6:00-8:00 p.m. WHERE: Community Outreach Waisman, 122 E. Olin Ave, Madison WI 53713

Please try and RSVP by Monday, February 20, to your case manager or FSRC, 237-7630. You are welcome to attend even if not able to RSVP before event.

Eight Things Siblings of Children with Special Needs Struggle With

Reprinted from The Washington Post 12/20/2016 Having a sibling with special needs is a reality many children are born into, including my three typically developing children. Of all the things my children experience that I never did, their experience of growing up with a sister with significant disabilities is something I struggle to understand, even as I watch it unfold daily. The advantages to having a brother or sister with special needs are numerous and include being more empathetic, more responsible and more resilient. However, these typically developing siblings also shoulder tremendous burdens that are not often or easily discussed. Documentary filmmaker Rachel Feichter has a typically developing 11-year-old and a 7-year-old, Talia, who has special needs as a result of a neurological autoimmune disease, Hashimoto’s encephalitis. Feichter discovered that there is a lack of information regarding the full experience of having a sibling with special needs when she searched for information to help her older daughter. She wanted to better understand the needs of her typically developing daughter, as well as help her daughter connect with other siblings with the same struggles, so Feichter began interviewing siblings of individuals with special needs for her in-progress documentary, which has the working title “Not Typical.” While every sibling — and every family — is different, Feichter found some common experiences, many of which my children are having.

Keeping Dane County families together by providing resources to support and care for children with significant disabilities at home

Community News

Feeling like they need to be perfect. Siblings of individuals with special needs know how hard their parents work to ensure all of their sibling’s needs are met, and often see their parents struggle to meet these needs. Many feel like they can’t make mistakes because that would add to their parents’ burden, so they believe they must be perfect at all times. This is an impossible standard to meet, and can lead to stress and feelings of inadequacy. One girl said she felt like she “had to be Ms. Perfect and not have any problems for [her] parents to deal with.” Another said that she felt as though she could never be “enough.” Feeling like they can’t express their feelings. Most typically developing children love their sibling with special needs. Yet they may also resent how much of their parents’ time is taken up by caring for their sibling or feel embarrassed about their sibling’s behavior. One girl said she “was never allowed to mourn openly or to be mad or sad about [her] brother” and another said her friends thought she was being mean if she said anything bad about her sister, even though friends with typically developing siblings often complain. Having a different idea of family and home. For most children the concept of family is based in togetherness. But when a sibling has special needs, family quality time may look different. One girl recalled that her mother was “assigned” to her sister with special needs and her father was “assigned” to her. The family often spent time apart, especially when it involved leaving the house. In many families, the sibling with special needs may not be able to attend certain events or go certain places for a variety of reasons, including therapy and medical appointments, physical barriers to access, or sensory issues. In some cases, the presence of caregivers and therapists may redefine what a family home is for children. In my home, for example, our child with special needs is normally fed by a personal care attendant. A therapist is often present at our family meals as well. Nonfamily members are typically also present even during lazy weekends at home. Some siblings said that places outside the home, such as school or a relative’s house, are more of a refuge for them than their home. Feeling as though their problems are minimized. Sometimes a sibling with special needs has complex and even life-threatening problems. An issue faced by a typically developing sibling, whether it is a problem with a friend or an academic struggle, may seem small compared to having limited mobility, learning difficulties or sensory issues that require intensive care or prevent a child from attending the neighborhood school. One girl said her parents rarely dealt with her problems, instead telling her to be “strong.” Another felt her parents never took her problems seriously because they considered her the “lucky one” for not having a disability. Feeling isolated. Typically developing siblings may be lonely because they don’t have peers who have siblings with special needs. So they feel different when their friends ask “what’s wrong with your sister?” Some children also feel self-conscious about their sibling with special needs, and aren’t sure when or how to tell their friends about him. Others feel uncomfortable inviting friends over because they are unsure of how their friend or sibling will react. Dealing with intolerance early and often. Children learn early that there is not universal acceptance for individuals with special needs, and that their sibling is not welcome everywhere that typically developing children are. This can be deeply disappointing to typically developing children who want to have shared experiences with their sibling. They regularly encounter individuals who refuse to move from seats designated for individuals with disabilities, and those who make unkind comments about other accommodations their sister needs. These early lessons in intolerance, and even hate, can affect their world view and make them cynical or resentful of the limitations placed on their sibling and themselves as a result. Feeling like they are asked to help too much. Some typically developing children are expected to help care for their sibling with special needs from a young age, even if that sibling is older. One girl said that she felt like the “attention police” at home since her mother was constantly telling her that she had to pay attention to her sibling with special needs. Others are expected to push wheelchairs, participate in therapy sessions, or attend to their sibling’s personal care needs by feeding them or helping to get them dressed. Many are told early on that they will be expected to care for their sibling when their parents are no longer able to do so. This puts enormous pressure on them. Feeling like they must grow up quickly. Because of the sum of their experiences, from feeling as though they are on their own to handle their problems to feeling pressure to be perfect to being given responsibility for their brother or sister, some siblings of children with special needs feel as though they are forced to grow up too quickly. Most typically developing children love their siblings with special needs beyond measure and are close to them. But to better understand and support them, it’s important to acknowledge their struggles. There is a need for more information about the experience of growing up with a sibling with special needs. While there are a few places the stories of these siblings are told, such as the fictional book “Wonder” by R.J. Palacio, hearing from the siblings themselves in “Not Typical” will help many feel less alone and better understood.

Family Support & Resource Center 101 Nob Hill Road, Suite 201 Madison, WI 53713 ph 608.237.7630 fx 608.237.7524 Return Service Requested

The Family Support & Resource Center provides respite care, financial assistance, case management and other family support services that give families hope - that their son or daughter with a disability will thrive with a little extra help.

Your support is greatly appreciated!

Keeping Dane County families together by providing resources to support and care for children with significant disabilities at home

Enclosed is my gift in the amount of: $10 $25 $50 $100 $500 Other ____________ Specific designation __________________________________________________________ Please charge my Visa or MasterCard: Card# __________________________________ Expiration date ___________ Signature ________________________________ Name _______________________________________________________________________ Address _____________________________________________________________________ City ____________________________________ State __________ Zip ________________ Phone (_____)_____________ Email address ______________________________________ May we publish your name in campaign materials? Yes No

Yes, I want to support FSRC’s mission to keep Dane County families together!

NONPROFIT ORGUS POSTAGE

PAIDMADISON WI

PERMIT NO. 549