Saturday, June 4, 2011

Down syndrome conference

As we are becoming aware of conferences that may interest our members, we will post them accordingly.  There are two conferences coming up in Orlando in the next few months. 

The first one is being hosted by the International Mosaic Down syndrome Association. 

Here is the link to their website.  A direct link to the conference is here--  The conference is scheduled for July 8-10.

Here is a breakdown of some of the presenters and what they are talking about.

Confirmed Presenters
The speakers below have confirmed to present for the 5th Biennial Research and Awareness conference held in July 2011.

"Bringing You Protected Tomorrows: Budgeting and Saving for Now and the Future"
By Mary Anne Ehlert from Protected Tomorrows

Learn how to manage your money in these difficult financial times. In this interactive workshop designed for teens and young adults with special needs. Mary Anne will answer the questions: Why is everything so expensive? What happened in the stock market? How do I set up a budget and why is it important to have? How much money do I need for today? Where does the money come from? How much should I have saved for emergencies and how much should I have saved?

"Bringing You Protected Tomorrows: Your Journey Through an Eight Step Special Needs Planning Program"
By Mary Anne Ehlert from Protected Tomorrows

The workshop will provide a passionate glimpse of her life with her sister living with Down syndrome. The presentation will be uplifting and entertaining as well as provide a good basic understanding of some important facts. Participants will develop the foundation for their family's own personal Eight Step Future Care PlanTM. Some Topics of discussion will include: how to create a map of the future, how to prepare legally and financially, how to incorporate and maximize government benefits, how to prepare for transition, and how to communicate your Future Care PlanTM to your family.

"Building Inclusion: Different Stokes for Different Folks"By Dr. Ashleigh Molloy, Transformation Education Institute Los Angeles, CA

The inclusive learning environment for students with Down Syndrome will validate the 'ableness' of all through respect and dignity based on principles of equity, diversity, and community. Students need to be seen as persons who vary in culture, race, language, gender, SES and ability. These characteristics intersect and must be considered in plotting their educational journey as holistic learners. The ultimate goal for both is a successful learning experience for the student. The session will be interactive, multi-sensory, involve drama, music, story telling, and humor.
"Children Vision Awareness for Parents and Guardians"
By Maria Dellapina, Founder of SPECS4US

This presentation with provide an explanation of the eye test, diagnosis problem with wearing glasses. This questions and answer based workshop will answer common optical questions, ease parents' minds by informing them about eye exams, and give suggestions on helping children get use to wearing glasses.

"Competitive Swimming in a World Arena"
By Geoff Smedley, Ph.D in Sports Development for people with Disability, CEO of DSISO

The 'Down Syndrome International Swimming Organization' (DSISO) exists in 23 countries and 5 continents to give people living with Down syndrome (T21 and Mosaic) opportunities to compete at an International elite level. Its objective it to provide a similar environment to that of the Paralympics where swimmers compete equally over the same disciplines at an elite level.The workshop will give information about the structure of DSISO, explain the registration process for swimmers, and to encourage participation in the World Program.

"Don't Say 'Best' at IEP Meetings & Other IEP Secrets"By Yael Cohen, Founder of Get IEP Help
This presentation will such questions as:
"Which forms do I/don't I have to sign at the meeting?"
"How do I get a copy of those reports in advance of the meeting?"
"How do I get the evaluation the school said you can't have?"

You'll learn what you should share with the team, and what not, and how to respond if the school says you can't get and IEP because of something called RTI. Attend this conference to learn the 10 most crucial secrets that the school knows and won't necessarily share with you at your IEP meeting.

"Down Syndrome Footprint"By Katia Hauser, Down Syndrome Footprint
The Down Syndrome Footprint Foundation and store focuses on raising awareness, empowerment, and employment opportunities. This session will look forward to sharing where Down Syndrome Footprint came from, why it is important in the community, and the many employment opportunities that are and will be available that will benefit individuals with Mosaic Down Syndrome across the United States and beyond. The Down Syndrome Footprint Foundation offers college scholarship and awareness billboard opportunities for your group to take advantage and our ever growing Down Syndrome Footprint Online Store provides fantastic independent business and employment opportunities for individuals with Mosaic Down Syndrome.
"Down Syndrome & The Divine Chromosome"

By Doug Billings, Author of 'Your Wonderful Life:No Matter the Past, Life Always Holds Wonder, Joy, and Meaning'

This presentation provides motivational, inspirational, and a sometimes humorous looks at the lives, characteristics, possibilities, and wonder of those who have Down syndrome. Beginning with how to deal with the initial news that Down syndrome will touch your life, he will describe emotions, validates hope, details pathways that lead to wonder, and defines the miracles surrounding families and people who have Down syndrome. Time will be devoted to the facts about milestones, schooling, friendships, and possibilities that face those with Down syndrome. The workshop will also affirm that life with Down syndrome has dignity, joy, purpose, and meaning.

"Early Intervention: Oral Placement Therapy for Children with Down Syndrome"

By Sara Rosenfeld-Johnson, from TalkTools

This workshop will discuss the importance of a prescribed therapeutic oral phase feeding program used in conjunction with addressing language development for the infant population with Down Syndrome. It will identify characteristics of motorically untreated children with Down syndrome, discuss feeding methods used in Oral Placement Therapy, and discuss the outcomes of treatment versus non-treatment.

"Everything I Need to Know I learned (or will learn) in Kindergarten"

By Debbie Gelinas, Self Advocate, IEP Coaching and Advocacy

As an advocate, she equips parents to make a smooth transition for their child from pre-school to 'real' school. This workshop will cover IEP basics for the early years. The focus is for children to be taught how to live as independently as possible. Our responsibility is not to have them surpass their peers, but to live knowing they are able to go for their dream. Remaining mindful that most of what a person really needs to know about how to live, what to do, and how to be, they learned in kindergarten. The workshop will use the poem as a guideline following the simple rules: Share everything, Put things back where you found them, Clean up your own mess, Wash your hands before you eat, Flush, Say sorry when you hurt somebody, Don't hit people, and when you go out in the world, watch out for traffic, hold hands, and stick together.

"Future of Down Syndrome Research"By Dr.Colleen Jackson-Cook, University of Virginia Commonwealth Pathology PO Department
Presentation will share the most recent research findings about the efficiency of new high density microarray technology for diagnosing mosaicism for trisomy 21, and the length of the chromosomal telomeres in the normal compared to trisomic cells from the normal compared to trisomic cells from people with mosaicism for Down Syndrome to see if there are differences between the types of cells and if these differences provide cues as o why people with trisomy 21 age prematurely and have an increased risk for developing dementia/Alzheimer's disease. Will also include differences found in the epigenetic patterns of genes in individuals with mosaicism who have heart problems compared to those who do not develop congenital heart abnormalities.

"Getting the Word Out"

By Rob Batezel and Roxanne Batezal M.S., C.C.C.

This is a joint session for parents, teens, and young adults to discuss how and when to advertise the mosaic Down syndrome or Down syndrome diagnosis, talk about their hurdles and capabilities are and lay out what is helpful and not helpful to them. Chilren and adults with Down syndrome will benefit from this session since they need to know how and when to explain their unique strengths and weaknesses to their peers, coaches, etc. Examples of brochures and display boards will be available. There will be plenty of opportunity for asking questions and participants will break out into a small group session to practice advertising.

"Human Sexuality and Down Syndrome"

By Doug Billings, Author of 'Your Wonderful Life:No Matter the Past, Life Always Holds Wonder, Joy, and Meaning'

This session provides an overview of how to talk about sexuality with kids and teens who are living with Down syndrome. Sex education, appropriate for the developmental level and intellectual attainment of individuals with Down syndrome, adds to the quality of life by engendering healthy sexuality, reducing risk of abuse, avoiding sexual misunderstandings, preventing disease transmission, preventing unwanted pregnancy, and alleviating other problems related to sexual function. The session with explore facts vs. myths of human sexuality among people with Down syndrome, provide practical advice on how to discuss sexuality with your children, and to affirm that life with Down syndrome can lead to adulthood with meaningful adult relationships.

"Obstructive Sleep Apnea and Ear, Nose, and Throat Problems Seen in Down Syndrome"

By Dr. Sally Shott, Cincinnati Children's Hospital Center & University of Cincinnati Department of Otolaryngology Head and Neck Surgery

This session will review the various ear, nose, and throat (ENT) problems seen in children living with Down syndrome. This includes problems with chronic ear infections and hearing loss, sleep disorders, including sleep apnea, and chronic nasal drainage and sinusitis. It will provide a better understanding of the most common ear, nose, and throat problems, current treatment options, and provide information on how to know when to ask your primary care doctor for a referral to an ENT specialist.

"Post-Secondary Education: From Dream to Reality"

By Tracy Terrill, Director of Shepherds College in Union Grove, Wisconsin and Angela Houk, Dean of Shepherds College in Union Grove, Wisconsin

This session will investigate the various categories of post-secondary educational opportunities available for individuals with intellectual disabilities. It will also discuss effective means for determining which type of post-secondary option is best suited for each individual, so that an optimal fit between student and school is achieved. It will include strategic planning for how best to prepare a prospective student and their family for this important and challenging transition to post-secondary education.

"Precision Academics- Creative Minds 'Celebrating Disney's Imagination' "

By Val Gray, From Precision Academics New South Wales, Australia

"Creative Minds" is a high energy program providing teenagers and young adult participants with a wonderful morning of fun and challenge. Participants and volunteers will work together to complete a wide rand of challenges including: Drama, model building, dance, trivia, and games. This workshop guarantees that you will have fun, make new friends, and surprise yourself with just how much you are able to do.

"Precision Academics- Jarvis Learns to Read"

By Val Gray, From Precision Academics New South Wales, Australia

"Jarvis Learns to Read" is an outstanding program for absolute beginning readers, writers, and communicators of all ages. The program is specifically designed for students who have very limited spoken and/or signed communication. The main objectives of this workshop are to teach you how to use the program, show how they the program can reinforce and build skills in students who find reading, writing, and communicating difficult, and to show strategies that will transfer these skills to a more advanced learning and real world situations.

"Precision Academics- Supporting Lifelong Learners Who Have Down Syndrome"

By Val Gray, from Precision Academics New South Wales, Australia

The workshop will celebrate the journey from pre-school to young adulthood for students with special learning needs, with a specific focus on students of all ages who have Down syndrome. The main objectives include showing how easy it can be to provide outstanding resource support for students who have Down syndrome regardless of their age or ability level, provide you with "real world" examples to help to better understand the resources with ease and confidence, and to inspire you to celebrate the joy of life long learning.
"Reach for you Dreams and Celebrate Abilities- Self-Employment Works for Me!"By Dylan Kuehl, Self-Advocate and Owner of Olympia Washington
The presentation will leave attendees feeling empowered and encouraged to validate their skills and abilities. Attendees will know the value of building a "YES" team and have new ideas of how to build employment based on a person's passion and joys. Dylan Kuehl reminds attendees to REACH FOR OUR DREAMS, living life with Down Syndrome is Not the obstacle it is often perceived to be.

"Reading on the Go Wherever 'igh' Go"

By Judy O'Halloran, Mother of Son with Down syndrome,Wordy Worm Reading

Learn the answer to the question, "How can I help my child to read when I don't have the time and I don't know how?". This session is geared for parents of preschoolers, emerging and established readers. Come on an interactive journey through grocery stores, restaurants and playgrounds to learn how to help your child's reading on the go wherever you go. Topics include phonograms (single and multiple-letter combinations that represent the smallest sounds in words); teachable moments; learning types; strategies; activities, comprehension and the components of literacy.

"Teaching Your Kid to Read- In a Way That Works!"

By Denise MacDonald, President-Founder of eReadingPro

Numerous studies have shown that a large percentage of children are visual learners-particularly children born with Down syndrome. Visual learners favor the use of their right-brain when reading and tend to read words as pictures. This session will give an understanding of how your child learns, why they may be struggling to read currently, and an effective way to teach them. Attendees will leave this session with a good understand of how their child learns, as well as knowledge of how to help them learn to read using an easy and effective method. The method taught incorporates the whole word approach, to accompany current phonetic programs.

"When Just Any Road Won't Do"By Yael Cohen, Founder of Get IEP Help
As the Cheshire Cat commented to Alice, "If you don't know where you're going, any road will do." Come learn about how detailed the Present Level of Functioning should be in your child's IEP and how how to get from there to S.M.A.R.T. goals, which will direct and measure your child's school progress. Discover if your set goals meets the S.M.A.R.T. Goal qualifications as it is Specific, Measurable, Action-Based, Relevant, and Time Limited. Long-term Professional Special Education Advocate Yael Cohen, of Get IEP Help, will use the examples you bring from your child's IEPs, along with her own examples. (You can drop off your IEP examples at her Exhibitor booth on Friday.)
I am trying to find some information about the second one, which is being held August 12-13.  This is a statewide annual Down syndrome conference for Florida.  This is also being held in Orlando at the University of Central Florida.  As I find out more information, I will let you all know.  Any specific questions, please contact us.