The National Fragile X Foundation Podcast

Experienced parents and conference-goers, give you the lowdown on how to prepare for the 13th International Fragile X Conference in Miami.

Featuring

Jayne Dixon Weber

Arlene Cohen

Michele Kaplan

Part 3

The Emotional Aspect of the Conference

Taking Care of Yourself

Meeting New Friends and Reconnecting

Questions and Concerns

Experienced parents and conference-goers, give you the lowdown on how to prepare for the 13th International Fragile X Conference in Miami.

Featuring

Jayne Dixon Weber

Arlene Cohen

Michele Kaplan

Part 2

When are Most People Arriving?

What Kinds of People will be There?

The Wednesday 3:45 Session

Other Things to Know

Spotlight on Extra Conference Activities

Experienced parents and conference-goers, give you the lowdown on how to prepare for the 13th International Fragile X Conference in Miami.

Featuring

Jayne Dixon Weber

Arlene Cohen

Michele Kaplan

Part 1 features

Getting Ready at Home

Arriving at the Miami Airport

Nearby and Must See Attractions

Conference Registration

Childcare

With Karen Riley, PhD, Cindi Rogers, parent, and Jayne Dixon Weber, Coordinator of Support Services, NFXF & parent. A 65 minute recorded interview about toileting ideas.

This is from the archives and was recorded in April 2009.

In this episode, we interview two people whose children are moving forward in their lives. Melissa Street's son Jesse is transitioning into a typical classroom, and Carolyn Jackson's two daughters are planning life after high school.

What is self-regulation and how do we modify it for Fragile X?

Join the NFXF's Robert Miller and Jayne Dixon Weber as they interview LINKS Leader/Parent Laureen Majeske and Developmental FX's Tracy Stackhouse and Sarah "Mouse" Scharfenaker for a discussion on how self-regulation makes things work for Fragile X.

Note: We apologize for some technical difficulties throughout much of this Podcast. We promise that we are doing our best to find a good way to record our calls so that it is much clearer and has less echo. Please bear with us as we get used to these new technologies!

Join us as we speak with Vicki Sudhalter, PhD, about Individualized Education Plans.

The Individualized Education Plan (IEP) is a very influential document in the academic life of any child with special needs. In this session we will discuss how to help create an IEP which addresses and helps to ameliorate behavioral challenges confronting children with fragile X syndrome (FXS). This presentation will address the importance of a child's IEP and the IEP writing and approval process, with an emphasis on the importance of including accommodations for hyperarousal as part of the IEP for any child with FXS.

We speak with the Foundation's Support Services Coordinator Jayne Dixon Weber about her holiday experiences with her FXS-diagnosed son Ian. She gives a few tips on how to deal with the holidays, which can also be applied to other situations.

You can reach Jayne Dixon Weber at [email protected]

Supplementary Materials:PDF of Powerpoint Presentation (download)

This presentation is designed to give participants the skills and confidence to present the topic of FXS to their child’s classmates. Reaching out to students is a great way to provide a personal understanding of Fragile X along with facts about what is Fragile X. This understanding of fragile x and disabilities in general will help foster friendships and compassion.

Holly Roos is the mother of 2 children, Parker & Allison both affected by Fragile X Syndrome. She is the founder and president of the Central IL Fragile X Resource Group and Board member of Advocates for Access in Peoria Heights, Illinois. In 2007 Holly was the winner of WEEK's 25 women in Leadership for her work in Fragile X. The National Fragile X Foundation recognized Holly’s outstanding contributions to the FX Community with the Education and Awareness Award at the 11th International Fragile X Conference.

Supplementary MaterialPDF of Powerpoint Presentation (download)

Learn about Sensory Integration with Tracy Stackhouse, MA, OTR, and Sarah “Mouse” Scharfenaker, MA, CCC-SLP. They are co-founders and directors of Developmental Fragile X Resource Center in Denver, Colorado.