WE ARE IN!!!!!!!!!!!!

Owen and I have been accepted to be in the study, (see below), which takes place at the world renowned University of California MIND Institute. As a further example of my insanity, the research study will require monthly trips to Cali for SIX MONTHS (all expenses paid, genuine WOOT!)! Yep, I'm insane but beyond excited, apparently this place is like the Mother Land for Fragile X.
Six trips to Cali with 3 year old who has the mentality of a 2 year old and the body of a 5 year old? That, I'm a leeeeeettle scared (lotta scared). However I will be looking into the Boston Wings for Autism Program which is for a program for children with special needs to help prepare for air travel.  We will be starting the research study in May so we have time to prepare.  Like calling the doctor and getting MEDICATION.  (Maybe some for Owen too.).

"Study: Parent Mediated Language Intervention for Young Children with Fragile X Syndrome

The Laboratory on Language Development in Neurodevelopmental Disorders has received funding from the National Fragile X Foundation to conduct a pilot study examining a parent-mediated language intervention.  We are now recruiting children with fragile X syndrome and their biological mothers to participate in this study. Children should range in age from 2- and 6-years, have a confirmed diagnosis of FXS and have very little spoken language. Participation in this project will require parent-child dyads visit the MIND Institute once per month for six months. Travel and related expenses will be covered by the project. The format of the intervention sessions will include written information and video examples as well as clinician coaching and feedback during parent-child interaction.

Many research studies for other groups of children have demonstrated that parents can support their child’s language development by playing and responding to their child in ways that are verbally responsive; that is, by using child-centered strategies that provide frequent opportunities for language learning. Thus, teaching caregivers to maximize their use of responsive verbal strategies during daily routines and interactions has become an empirically supported approach to early language intervention. Compared with clinician-implemented language interventions, involving the parent as the intervention provider leads to increased intensity of treatment and increased opportunities for children to generalize newly learned skills across everyday environments.

Our language intervention program, which is delivered by speech/language clinicians, incorporates two additional components that we hope will make the intervention especially useful and convenient for families of young children with FXS.

1. Use of positive behavior supports to decrease challenging behavior
   In  addition to delays in spoken language, young children with FXS also can display a number of behaviors (for example, hyperactivity, anxiety, and symptoms of autism) that interfere with the ways in which they initiate social interactions, play with toys, and participate in the types of shared interactions that support language learning. Our intervention program includes a functional assessment and behavioral support planning from a Board Certified Behavior Analyst. In addition, positive behavior supports are integrated into all intervention sessions with the goal of decreasing challenging behaviors that can disrupt the process of parent-child interaction and interfere with successful language learning.
2. Use of distance technologyTo increase the number of sessions during which the parent can receive feedback and coaching from a clinician, parents will participate in weekly intervention sessions conducted via distance technology. In addition to decreasing the need for families to travel to participate in the intervention, the use of distance technology allows the clinician to provide feedback and suggestions to the parent as they interact with their child at home.

We are very excited to offer this intervention program and encourage you to contact us if you are interested in participating."