For Parents

Updated Information for Parents on the upcoming Florida Down Syndrome Conference on Feb. 24-25, 2012!!
Plenary Session Speakers include: Lauren Potter, “Becky” on Fox TV’s Emmy-nominated show “Glee” and spokesperson for “End the Word” campaign; Dr. Andrew Daire, nationally recognized expert on families and relationships; Dr. Brian Skotko, international expert on Down syndrome, author and geneticist-physician; Sue Levine, co-author of “Fasten Your Seatbelt: a Crash Course on Down Syndrome for Brothers & Sisters” (presenting at Sibling preconference session Friday afternoon only); and award-winning photojournalist and filmmaker Dan Habib and son Samuel Habib, star of the documentary film “Including Samuel.”

Workshops will include (subject to change due to speaker/venue changes):
Keeping Children Healthy– the Latest Medical Updates for Parents & Professionals (Brian Skotko, MD & L. Pollack, MD)
Enabling Your Student’s Success (Lillian Sigler, FIN & Kathy Becht, MA)
The How’s & Why’s of Guardian Advocacy (Frank Nisi, Esq.)
Preparing Teens for College or Living Independently (Crystal Makowski, UNF)
Impact of Oral Motor Skills on Speech & Eating (Debra Beckman, SLP)
PT Pointers for Preschoolers (Jen Tucker, PhD, physical therapist)

Keeping Adolescents Healthy—the Latest Medical Updates for Parents & Professionals (Brian Skotko, MD & L. Pollack, MD)
Preschool Inclusion Do’s and Donts (Child Development Ctr., Rollins College)
Educational Advocacy Roundtable (Deb Gelinas, Jamie Jessup, Lauren Morris)
Common Dental Issues in Children & Adults with Ds (W. Michael Ingalls, DDS)
Financial Planning for People with Special Needs (Michael Allen, CFP)
Real-World Apps for Adults—Ipads & More (Pamela Resnick, PhD, FAAST)

State and National Advocacy Issues (Brian Skotko, Debbie Revels, DSAJ, Jenn Sikora, DSACF and Sen. John Thrasher )
Promoting Mental Wellness in Adults with DS (Andrew Daire, PhD, Amy Van Bergen, DSACF)
Dreaming Big & Following My Dreams (Peter Becht, self-advocate)
Verbal Behavior Therapy for Promoting Language (Stacy Taylor, BCBA)
OT Tips: Enhancing Fine Motor Skills Across the Ages (Rebecca Samaan, OTR/L)
ENT & Sleep Apnea Q & A (Drs. Akin Ajayi and Eric Jaryszack

To register online: http://education.ucf.edu/form/DSACF_reg.cfm

Registration Packet & Schedule: Down Syndrome Conference Newsletter 2012

OTHER RESOURCES -These resources are designed to help parents get the information and support they need to address the specific joys and challenges of raising a child with Down Syndrome.

If you are a new parent, make sure you check out our New Parent’s Guide first.

Downtown – Our Quarterly Newsletter

The DSACF publishes an information-packed newsletter four times each year (Spring, Summer, Fall and Winter) as well as special editions. DownTown is the voice of the DSACF and its members and welcomes submissions from parents and other family members, professionals in the field of Down syndrome and more. To start receiving DownTown and other important alerts from the DSACF, join DSACF. To download the latest issue of DownTown, please click here here.

New Parent Information Packets

If you are a new or expectant parent, congratulations! Please call to request an information packet by mail, in person or you can request one online by signing up to become a DSACF member and put “request packet” in the note field.

Parent-to-Parent Connections

The DSACF is comprised of hundreds of diverse families (of all ages of children and adults with Down syndrome, different ethnic/cultural backgrounds, various local counties, etc.) who have tons of information and wisdom to share with each other. One of the best resources for information (questions about your child’s development, doctor recommendations, school issues, etc.) are other parents. The DSACF provides parent-to-parent mentors. If you would like to talk to another family who has experience walking on your same path to a brighter future (whether it’s a recent heart surgery or other medical concern, home schooling, private or public school or inclusion issues, transition planning, social and recreation opportunities for adults, etc.). Contact Amy Van Bergen for more information.

Other parent to parent connections include our Community Groups.

The DSACF recognizes that there are varied interests among the DSACF community. Examples include geographical considerations, cultural considerations, educational considerations, and age considerations. When there are common interests among some families that differ from interests of other families, the DSACF recognizes the benefits of a community group among these families. Where these interests are aligned with the DSACF’s mission statement, then the we recognizes the benefits of distributing some of its resources to an organized community group that operates under the umbrella of the DSACF. Such available resources often include: financial support, educational support, professional assistance and physical property.

The DSACF proudly supports the following Community Groups:

1. Community Group of Volusia County  Leader: Michelle Jenkins

2. DSA of Polk County is now its own 501c3 nonprofit! Leaders: Karyn Spencer and Tracy Garcia  Go to http://www.dsapolk.org/

3. Education Support Group  Leader: Debbie Gelinas

4. Hispanic Outreach  Leader: Wanda Cruz and David Garcia

5. Kiwanis Aktion Club  Leader: Gary Israel http://slp.kiwanis.org/AktionClub/home.aspx

6. Sign and Play  Leader: Jenn Sikora

7. Tweens & Teens  Leaders: Tim and Julie Hagan

8. Young Adults  Leader: Kathy Byrnes

9. Dads Appreciating Down Syndrome (D.A.D.S.) Leaders: Travis Frosch, Chad Hendricks, John Samaan http://www.centralfloridadads.com/

10. Community Group of South Lake County  Leader:  Lynn Cyr ltcyr@cfl.rr.com  Facebook page DS of South Lake County

Monthly Informational and Support Meetings

DSACF hosts monthly support meetings usually on the fourth Friday of each month featuring local and state experts on healthcare, early intervention, guardianship options, community resources, estate planning, how to write smart IEPs and more. Meeting Schedule | Location Map

Free Special Clinic for Special People

The DSACF, along with co-sponsors Arnold Palmer Hospital for Children and the Developmental Center for Infants & Children at the Howard Phillips Center, offers an annual free medical screening clinic for children, teens and adults with Down syndrome. The Special Clinic that features professionals such as cardiologists, ENTs, dentists and orthodontists, eye doctors, orthopedists, therapists and many others, as well as community resources. By appointment only. Check the DSACF Schedule for our next clinic (this event is usually held in February or March).

Educational Support/Development of Individual Education Plans (IEPs)

If you would like some ideas on IEP goals, classroom or school placement, etc you can contact the DSACF for educational support. Trained volunteers are also available to attend your student’s IEP meeting. Call 407-478-5621 for assistance or email Amy Van Bergen.

DSACF Therapy Scholarship

Revised Scholarship Applications are available and are due in by August 1 and February 1 of each year. To help support the growth and development of children with Down syndrome throughout Central Florida, the Down Syndrome Association of Central Florida (DSACF), through a generous donation as well as Step Up for Down Syndrome Walk monies, offers a scholarship program for Speech, Language, Physical, Occupational, Behavior and other early intervention therapies. Alternative therapy programs will be considered on a case-by-case basis. The DSACF Therapy Scholarship Program awards up to $3,000 in financial assistance to DSACF member families toward the costs of the mentioned therapies. Click here to apply.

Special Workshops & Training

Please see our Event Calendar.

Free Family Day at Universal Studios

What a great day our DSACF members had at Universal Studios Orlando. One time annually, Universal Studios provides a free family fun day at the park. Family size and availability is limited. This year they are inviting 400 free guests/DSACF members. Check our the DSACF Facebook group page for lots of fun photos and be sure to sign up early for the 2011 day! Details will be emailed to all DSACF members (dues are renewed every August 1), on Friday, Sept. 30 and deadline to sign up will be October 10. Participants are required to purchase and wear a Universal-DSACF tshirt ($7 each). Many thanks to Gabrielle Bennett, volunteer,and Ray Stines and all of the Universal Studios employees who volunteer to escort our families!

Free Day at Cirque du Soleil “La Nouba” and Backstage Tour

More Info [pdf] or contact us.

Teen Talk

6 week social skills course offered annually for teens (ages 13-21 years) with Down syndrome. Workshop facilitator is a licensed mental health counselor with significant experience working with children and adults with disabilities. See event calendar for future dates.

Step Up for Down Syndrome Walk

To celebrate October as Down Syndrome Awareness Month, the DSACF offers this family fun day for families and the community alike at Lake Eola, Orlando. The Step Up for Down Syndrome Walk is the primary fundraiser for all of the activities, supports and programs offered by the DSACF. For more information see our Step Up for Down Syndrome Walk page or our event calendar.

Annual Community Champions Awards Banquet

Every year the DSACF honors local individuals, businesses and groups that advocate on behalf of people with Down syndrome and other disabilities. This event is now part of the Annual Florida Down Syndrome Conference held in February at the University of Central Florida. For more information please see our event calendar.

Disability Awareness Presentations

If you, your school or place of worship or community civic group would be interested in a 20-60 minute disability awareness presentation with facts and myths about Down syndrome, please contact us.

Family Emergency Fund

For DSACF member families, the DSACF offers an emergency fund for those in short-term financial or medical crisis. Contact Amy Van Bergen for more information.

General Resource Information & Referral

The DSACF is currently working on an updated member resource directory. In the meantime, if you have questions about resources (physicians, therapists, schools, etc.) please contact Amy Van Bergen for more information.

For more information on these or on starting a new group, click here for more information.