Regional Conference

A sensational safari: A tour guide to down syndrome

2016 Recap

The Marriott West in St. Louis Park may not sound like an exotic locale, but on April 30th is was the site for A Sensational Safari:  A Tour Guide to Down Syndrome.  160 intrepid tourists registered for the safari also known as the 12th Biennial Regional Conference of the Down Syndrome Association of Minnesota.

DSAM flew in 4 nationally recognized experts as tour guides.  Michael Remus from Arizona was the morning keynote speaker and spoke on the topic of Inclusion.  Remus also presented two separate workshops, one focusing on Behavior and another on Inclusive Classroom Best Practices. Joan Medlen, a dietician from Oregon, spoke on Creating Fearless Eaters and also presented on the topic of Weight Management.  Sarah Mai from Kansas conducted two of the most popular workshops of the conference focusing on Social Skills and Inclusion in the Community for different aged children.  Kishore Vellody, M.D. addressed Complex Medical Needs/Dual Diagnoses and also held an Ask the Doctor session.

In addition to these national speakers, DSAM tapped local experts to round out the conference agenda.  Kim McConnell, M.D. addressed the Healthcare Guidelines for Children; Jacki Trelawny from Family Tree Clinic spoke on Fostering Healthy Sexuality; a trio of experienced teachers helped parents with IFSP and IEP Goal Writing; and another trio of siblings shared their perspectives of growing up with a sibling with Down syndrome.  Dave Reedstrom and Joe Kukla covered the important topics of Estate Planning and the Letter of Intent. New Parent Talk Time was facilitated by Brandon and Tiffany Yerxa, David Forney and Terri Yira.

It was a highly educational, informative day but many attendees found the energy after the conference to attend DSAM’s Social Hour and Wine Event.  They dined on heavy appetizers and sampled wines, bid on silent auction items and mingled with conference speakers, board and staff members, as well as fellow DSAM members

Quick Links

*If you are coming from outside the Metro and would like to stay at the hotel, a reduced fee is being offered, $96 + tax a night, just ask for the Down Syndrome Association rate.

Registration will close on April 28 at 9:00 AM


1991 – The year the Down Syndrome Association of Minnesota held its very first Regional Conference with the theme of Dreams, Expectations and Down Syndrome.

The sons and daughters of the folks who attended that conference have grown from children into adults. Some are attending college. Others hold great jobs and an increasing number live on their own in the community. Importantly, we’ve found that the idea that our children could was no starry eyed dream. Instead, it was something to count on – truly an expectation. Just as our speakers told us all those years ago.

After doing Regional Conferences almost dozen times, we are going to do it again: The Down Syndrome Association of Minnesota will hold its 12th Biennial Regional Conference on April 30, 2016 at the Marriott West. Once again, we will bring highly respected national and local speakers on various topics relating to Down syndrome to this year’s conference – topics that will set you dreaming while creating new expectations. Plus, as you can see below, there is a workshop for every age group in each session throughout the day.

A few new things to note this year:  As your Association tries to become greener, all speaker handouts and their presentations will be available on line. Prior to the conference, a link to all the materials will be sent to you.  There will be free wifi in the hotel so you may either access and copy the documents from home or use your mobile devices such as phones and tablets or laptops during the conference itself.  If you wish to have a paper copy of the compendium, the fee is $5 and it must be paid for prior to the conference.

Finally, we will also be hosting a social hour immediately following the conference.  For a fee of $15, you will be able to relax, enjoy some wine, appetizers, socialize with friends and speakers, as well as meet your staff and board.

We are looking forward to seeing you on April 30th!  Registration is limited to 250…so register early!

Schedule

7:30—8:30 Registration, Continental Breakfast, Exhibitors
8:30—8:45 Welcome from Kathleen Forney, Executive Director, and Kathleen Holiday, Regional Conference Committee Co-Chair

8:45—9:30 Keynote Speaker
Michael Remus

9:30—9:45 Break

9:45—11:00 Session I Breakouts:
1) Healthcare Guidelines for Children With DS—Dr. Kim McConnell (Birth to 12)
2) Strategies for Supporting Positive Behaviors in the Inclusive Classroom—Michael Remus (Ages 6-12)
3) Creating Fearless Eaters: Healthy Eating From the Beginning—Joan Medlen (Birth to 12)
4) Fostering Healthy Sexuality—Jacki Trelawny (Ages 12-18)

11:00—11:15 Break

11:15—12:30 Session II Breakouts:
5) IFSP and IEP Goal Writing—Mary Beth Erickson, Jennifer Olson and Jessica Ducklow (Birth to 14)
6) Social Skills and Inclusion in the Home and Community—Sarah Mai (Birth to age 5)
7) Complex Medical Needs/Dual Diagnoses—Dr. Kishore Vellody, (All ages)
8) An Important Aspect of Estate Planning: the Letter of Intent—Dave Reedstrom (All ages)

12:30—1:45 Lunch Break
1:15 – 1:45 Self Advocate Keynote speaker

1:45—2:00 Break

2:00—3:15 Session III Breakouts:
9) Weight Management Tips: Fearless! Person-Centered! And Mindful!—Joan Medlen (Ages 12-18)
10) Sibling Panel (Ages 6—18)
11) Have Questions? Ask the Doctor – Dr. Kishore Vellody (All ages)
12) Social Skills and Inclusion in the Home and Community—Sarah Mai (Ages 6 to 12)

3:15—3:30 Break

3:30—4:45 Session IV Breakouts:
13)  Life Planning for the Financial Future of a Person with a Disability—Dave Reedstrom (All ages)
14) New Parent Talk Time—Brandon and Tiffany Yerxa, David Forney, Terri Yira (Birth to 5)
15) Inclusive Classroom Best Practices—Michael Remus (Ages 6 to 18)

5:00—7:00 Post Conference Social Hour
Join us for a post conference wine tasting, heavy hors d’oeuvres and a silent auction. Additional $15, $25 at the door.

Workshop Descriptions

Session I Breakouts:

1) Healthcare Guidelines for Children With DS—Dr. Kim McConnell (Birth to 12)
This session will provide an overview of the most recent recommendations from the American Academy of Pediatrics for health care for children with Down syndrome, as published in the journal Pediatrics. This presentation will be focused on the age group from birth to 12 years. There will be time for questions from the audience about medical, developmental and behavioral concerns related to Down syndrome.
2) Strategies for Supporting Positive Behaviors in the Inclusive Classroom—Michael Remus (Ages 6-12)
Behaviors occur for several reasons. Students do not come to school to misbehave. We must approach behavior differently. This session will explore the reasons children misbehave and strategies in the classroom to avoid these behaviors.
3) Creating Fearless Eaters: Healthy Eating From the Beginning—Joan Medlen (Birth to 12)
It begins with a vision. A vision of health for your family. We all have a different vision of what it means to be healthy. Including a person with DS in your family doesn’t change that vision—but it may change the path. Add to that the lack of effective nutrition education in today’s schools—regardless of inclusion—and parents have a challenge! Challenges can be fun. Together we will explore sensory and oral motor challenges, discuss nutrition-related concerns specific to children who experience DS, and see the power of universal design for learning (including visual cues, early literacy techniques, and more) in creating successful, healthy lives for everyone in your family.
4) Fostering Healthy Sexuality—Jacki Trelawny (Ages 12-18)
Dealing with a child’s sexuality is a challenge to most parents. Keeping communication open with trusted caregivers can keep children from unwanted sexual contact while fostering the development of a healthy sexuality. With so many mixed messages in our culture about sex, where do we start and what’s appropriate for developmentally disabled youth? Can people with Down syndrome have an expectation of intimacy during their lifetimes? This workshop will suggest simple strategies to use when discussing sexuality that will help both parents and children feel at ease.

Session II Breakouts:

5) IFSP and IEP Goal Writing—Mary Beth Erickson, Jennifer Olson and Jessica Ducklow (Birth to 14)
This will be a “hands-on” workshop for parents dealing with IFSP and IEP goal writing, presented by 3 teachers with experience drafting goals: an early childhood Special Ed teacher; an elementary Spec Ed teacher and a teacher whose experience extends into middle school. Parents are encouraged to bring their child’s current IFSP or IEP, as well as ideas of their children’s strengths and areas that need work. The presenters will give a brief age-appropriate summary of the areas that are typically covered in the IFSP or IEP. Parents will then separate into 3 groups, depending on the age of their child and work with one of the three teachers to draft goals.
6) Social Skills and Inclusion in the Home and Community—Sarah Mai (Birth to age 5)
Attendees will learn how to facilitate positive social behaviors so your young child with DS can be socially successful. Social learning is critical, it needs to occur every day in every context, and it is never too early to start. You will walk away with practical solutions and purposeful language for everyday social situations specific to this early stage of development.
7) Complex Medical Needs/Dual Diagnoses—Dr. Kishore Vellody, (All ages)
This workshop will cover the diagnosis and management of common medical conditions that occur at a higher frequency in people with DS (cardiac disease, celiac, leukemia, sleep apnea, thyroid disease, etc.) as well as dual diagnoses (autism, ADHD)..
8) An Important Aspect of Estate Planning: the Letter of Intent—Dave Reedstrom (All ages)
What happens when you are unable to care for your loved one with a disability? No one knows your child better than you. He or she will become dependent on other caregivers who will not possess all of the personal knowledge and insights that you’ve accumulated over the years. The Letter of Intent, or Letter of Instruction, is designed to assist the new caregiver(s) in making this transition go as smooth as possible for everyone. This workshop will provide a step-by-step guide in creating your personalized Letter of Intent.

Session III Breakouts:

9) Weight Management Tips: Fearless! Person-Centered! And Mindful!—Joan Medlen (Ages 12-18)
Person-Centered. Mindful. Fearless! Self-Determined. These are all things we want for our children with DS throughout their lives. As parents, we learn tools and strategies to support this throughout the school age years. For some, concerns about weight begin to take a more prominent role in the teenage and adult years. This workshop is for you. We will take the same person-centered, mindful strategies and apply them to support self-determined weight management tools that can be used by our children, ourselves (as their coach), and the people who support them in their lives. In plain talk: We’re going to learn to use person-centered, mindful tools to coach our kids and any paid others in their (and our) lives toward the shared goal of healthy living.
10) Sibling Panel (Ages 6—18)
Three adult siblings share their perspectives on growing up with a sibling with Down syndrome. What was good and what was not so good; what their parents did right and what they wished their parents had done differently; as well as a glimpse at what they see for their future relationship with their sibling.
11) Have Questions? Ask the Doctor (All ages)
Dr. Kishore Vellody is Medical Director, Associate Professor of Pediatrics, DS Center of Western Pennsylvania and has a brother with DS.  This workshop is designed for you to ask questions about the medical care of your loved one with DS.  Questions can be submitted to DSAM ahead of time, or bring them to the conference written out if you wish to maintain the privacy of the person with DS.
12) Social Skills and Inclusion in the Home and Community—Sarah Mai (Ages 6 to 12)
This is a repeat of workshop #6, but the emphasis will be for children ages 6 to 12. Attendees will learn how to facilitate positive social behaviors so your child with DS can be socially successful. Social learning is critical, and it needs to occur every day in every context, including play dates, birthday parties, restaurant outings, and more. You will walk away with practical solutions and purposeful language for everyday social situations specific to this stage of development.

Session IV Breakouts:

13) Life Planning for the Financial Future of a Person with a Disability—Dave Reedstom (All ages)
This presentation provides information on how a family can best assure a quality of life for a person with a disability when the parents or caregivers are no longer available.  Topics include:  Wills, Supplemental Needs Trusts, Power of Attorney, Letter of Intent, Guardianships, avoiding family conflict and reducing professional costs.
14) New Parent Talk Time—Brandon and Tiffany Yerxa, David Forney, Terri Yira (Birth to 5)
Having a child with DS can feel like your world has been turned upside down. Emotions are all over the place. Husband and wives process feelings differently. This workshop is intended as a sharing time to help process fears and grief, joys and dreams. Brandon Yerxa and David Forney will meet with new dads; Tiffany Yerxa and Terri Yira will meet with new moms.
15) Inclusive Classroom Best Practices—Michael Remus (Ages 6 to 18)
Full inclusion in their neighborhood elementary school is a dream many parents have for their child with DS. If you share this vision, this workshop will examine barriers to inclusion and will present strategies to overcome them. Topics include least restrictive environments, access to the general curriculum and tips for social inclusion at school.

Post Conference Social Hour and Silent Auction

Want to spend some time visiting with other DSAM members and speakers? Plan to join us at a wine tasting in the Donegal Room from 5 to 7 p.m. Heavy hors d’oeuvres will be served and you’ll have an opportunity to meet some of our national speakers, board and staff along with your fellow DSAM members.

Speaker Bios

Keynote speaker Michael Remus is a nationally known expert on inclusive best practices and behavioral issues.  Michael has a broad range of experience as a general education teacher, special education teacher, school principal, school board member, college instructor, special education director for a school district, state special education director and is also the parent of four children, two of whom have disabilities.

Joan Guthrie Medlen is a dietician who has focused her career on promoting quality lives, quality health, and connected communities for people with Down syndrome and related disabilities for the past 20 years.  She is adamant that the most important education she has received is from her sons and the many people who experience disabilities in her life.  Joan has received numerous awards, including two from NDSC:  the Tjossom Research Award and the Exceptional Meritorious Service Award.  She has written articles, book chapters, books, and created personalized tools to support people to live their ives in a person-centered, healthful way.  Joan lives in Portland Oregon with her husband Rex and their 26 year old son Andy, who has Down syndrome.

Kishore Vellody MD is a pediatrician in Pittsburgh, Pennsylvania and is affiliated with Children’s Hospital of Pittsburgh of UPMC.  He is also Medical Director at the Down Syndrome Center of Western Pennsylvania in Pittsburgh and has a brother with Down syndrome.  He received his medical degree from University of Illinois College of Medicine and did his pediatric residency at the Medical College of WI Affiliated Hospitals.  He is Board certified in Pediatrics and a Fellow of the American Academy of Pediatrics and has been in practice for 13 years.

Kim McConnell MD is a neurodevelopmental pediatrician at Gillette Children’s Specialty Healthcare at the Gillette Minnetonka clinic. Her practice is devoted to children with disabilities, including many with Down syndrome. She is Board certified in neurodevelopmental disabilities and pediatrics. Kim serves on the Board of Directors of the Down Syndrome Medical Interest Group – USA (DSMIG)and was Board President from 2014-2016. DSMIG has drafted Health Care Guidelines for children with Down syndrome in the past and supports the current guidelines published by the American Academy of Pediatrics. DSMIG is a group of health professionals committed to promoting the optimal health care and wellness of individuals with DS across the lifespan. DSMIG’s vision is to educate health care professionals on the latest research and comprehensive care regarding DS; facilitate networking among health professionals caring for individuals with DS; support development of DS clinics and to identify and disseminate best practices of care.

Sarah Mai was recently hired as the first Executive Director of The Mission Project in Mission, Kansas.   Prior to becoming ED, Sarah had worked at the Mission Project teaching the Problem Solvers group, facilitating the iPad Project, and providing individualized consultation regarding behavioral and social needs.  Trained as an Occupational Therapist, Sarah believes that means her primary goal is to improve the daily lives of individuals with disabilities.

Jacki Trelawny facilitates sex education with a passion for intersectionality and inclusivity with a widely diverse set of participants from private school groups and correctional facilities to parent groups and universities. Since 2009 Jacki has been teaching sex positive presentations about various topics surrounding sexual pleasure and health.  Through Family Tree Clinic (St. Paul, MN) she facilitates innovative, forward-thinking presentations to around 4,000 participants a year. Jacki has a BA in African American and African Studies from the University of MN – Twin Cities with a focus on literature and social justice.  Jacki recently made a presentation at DSAM’s  Youth & Adult conference on the topic Relationships:  Friends & Partners.

Brandon and Tiffany Yerxa co-facilitate the Maple Grove parent group for DSAM.  Brandon is currently serving as Vice President of the DSAM Board of Directors.  The Yerxas are huge contributors to the Step Up for Down Syndrome walk event and their son Winston will be featured on a Twin Cities billboard as a result of their impressive fundraising efforts.

Terri Yira has co-chaired and served on the Regional Conference planning committee for many years.  She served 6 years on the DSAM Board of Directors, 2 of those years as Board President.  When she stepped away from the Board she began volunteering  on the Step Up for Down Syndrome walk event.  She has a teenage daughter Madeleine with Down syndrome.

David Forney has served DSAM in many capacities over the years, he has served on the Step Up Walk Committee, Development Committee and has been instrumental in launching the Adult Matters Conference.  Currently David heads up the DSAM development committee.  Planning a trip to Ireland?  Ask David for advice…he has taken three trips there with his son David and possesses a wealth of helpful information.  For the Regional conference, we will be tapping his 37 years of experience as a father of a son with Down syndrome.

Mary Beth Erickson is an Early Childhood Special Education teacher with ISD 196 in Apple Valley.  Jennifer Olson is a Special Education teacher at Bayview Elementary in Proctor Minnesota.  Jessica Ducklow is a Special Education teacher at St Croix Preparatory in Stillwater Minnesota.  These three teachers have a combined 34 years of teaching experience and have collectively drafted and reviewed thousands of IFSP and IEP goals

Dave Reedstrom has an adult daughter Victoria with Down syndrome.  He has been a member of DSAM since 1985.  He has served on the Board of Directors previously and just recently rejoined the Board and was elected its President in January.  In addition to his work with DSAM’s Board, he served on the Board of Directors of Arc Suburban in the ’90’s and was Arc MN’s Chairperson for Executive Search Committees in 1991 and 1993.  He is the owner of Disability Planning Specialists and will have an exhibit table at the Regional Conference where he would be happy to make appointments with families who want to begin estate planning.

Registration Information

Fees: Fees also include continental breakfast, snacks, and lunch.

DSAM Members: $70

Non-DSAM Members: $90

PRINTED compendium: $5

Please note: All conference materials will be available to you, online, for free. 

Post conference social hour: $15 ($25 at the door)

Limited scholarships are available to DSAM members. Please contact Kathleen Forney, by email: kathleen@dsamn.org or by phone: (651) 603-0720.

Registration will close on April 25th or when capacity has been reached (250 attendees)

How to register

Register online now by visiting http://weblink.donorperfect.com/regionalconference.

Register by mail by downloading our 2016 Regional Conference Brochure (.pdf) (or just the registration form) and mail with payment to:

Down Syndrome Association of Minnesota

Attn: Regional Conference

656 Transfer Road

St. Paul, MN 55114