Earning our Wings,by Sally Nantais, FXAM Quarterly Newsletter, April 2008
During March, Austin and I completed our fifth and final visit for our four-year study, to the Waisman Center in Madison, Wisconsin, for the FXS Language and Communication Study.
He did absolutely awesome!
Ten years ago, I would have never dreamed that Austin would be such an accomplished traveler.
How did we get here? The key to our success was first in understanding Austin, looking at the journey from Austin’s perspective, understanding his anxiety and fears and taking measures to ensure they were minimized.
Five years ago, before our first trip, we began with a family field trip to Detroit Metro Airport in which I was able to expose him to many aspects of air travel. It was an opportunity to take away many of the unknowns. It was an experience that not only benefited Austin but his sisters, Natalie and Genevieve, as well. (That experience was documented in one of my monthly columns for a local newspaper, Wings Earned by flying with little children.)
Every trip was carefully planned taking into consideration what I could do to make the trip successful. We always travel non-stop, reducing transitions and wait times, and the potential for unexpected delays. At first, we only traveled during Austin’s best time of the day, the earlier the better. As time passed, we became more adventurous for our return trips home, traveling late in the evening.
We had our unexpected adventures, spending two hours on Detroit’s runway on one trip waiting to be deiced (that was the last time we scheduled a trip in February.) Once we even made a mad dash to the airport in Madison to try to get home earlier by going standby on an afternoon flight. As luck would have it that would be the one trip we were randomly selected for intensive security screening but we managed very well with no meltdowns due to strange people unpacking his treasures in his backpack.
With every trip, Austin’s Teddy has accompanied us. Austin doesn’t sleep with Teddy anymore but he always digs him out of his toy box and brings him along for our journeys. Teddy is part of our routine and routines are very important to Austin.
Austin has navigated shuttle buses, taxis, escalators, moving walkways, elevators and express trains like a pro. We always pre-board the plane, eliminating waits and being crowded by others. His only issues have been with the connecting walkways from the terminal to the plane. This phobia (or whatever it is) occurred after our Disney World trip in 2005. It’s classic OCD behavior, reminding me of Jack Nicholson’s character in “As Good As It Gets”. When Austin approaches a seam in the walkway, each seam, I had to coax him across, reminding him, “It's okay, the floor won't move.” During our last trip home, he got to the final platform where he would enter the plane and he froze. I had already entered the plane, I waited for him, telling him “It's okay, follow mom.” You could see the fear on his face. Then something unexpected happened, the flight attendant (who happened to be male) went around me, went to Austin and said "c'mon buddy, it's okay, we can do this" and he did.
Austin has earned more than just his wings on our adventures; he’s entered my world and mastered it better than a few adults I know. He’s not the only one who has earned his wings. Numerous people along the way, like the flight attendant who helped him board the plane or the staff at the Waisman Center who always make sure our needs are met; they have earned their wings, on a very different level.
2017 Update - The Nantais family is still very involved in research. It's our way of not sitting back on our heels and waiting for something to happen, It's our way to be a part of the change we hope to see in the understanding and treatment of fragile X disorders. I encourage others to participate. This page will list a few general links to research, in addition it will be used to assist researchers if they are struggling to find participants for any given study.
Research Studies Actively Recruiting Participants
Researchers at Purdue University are currently seeking parents and caregivers of children with fragile X syndrome for two ongoing studies through the Neurodevelopmental Family Lab:
Family Adaptation to COVID-19
Black parents and caregivers of children with fragile X syndrome under the age of 12 are invited to participate in a study of how families cope with stress caused by the COVID-19 pandemic (IRB-2020-517 - "Family Adaptation to COVID-19"). Participation lasts 7 weeks and includes (1) completing web- and smartphone-based surveys and (2) sharing videos of you spending time with your child. To be eligible, families must live in the United States, live at least part-time with their child, speak primarily English at home, and must be willing and able to download a free smartphone app to complete surveys. Families are compensated up to $120 in Amazon gift cards over the course of the study. To learn more, please contact Taylor at the Neurodevelopmental Family Lab at nddfamilylab@purdue.edu and mention the COVID-19 study in your email. Posted 2/16/21
Language Environment Analysis Project
Parents and caregivers of children with fragile X syndrome aged 36 to 60 months old are invited to participate in the Language Environment Analysis Project (LEAP) at Purdue University. LEAP focuses on early language development and early childhood experiences of children with fragile X syndrome (IRB-1811021381 - "Neurodevelopmental Natural History Study"). Study activities are completed from home and involve 1) two 2-hour parent interview sessions conducted via video chat, 2) one daylong audio recording of child vocalizations, and 3) completion of one online survey. All activities are completed within a 1- to 2-week timeframe. To be eligible, families must live in the United States, speak primarily English at home, and have access to Wi-Fi at home. Families are provided all necessary materials and are compensated $65 in Amazon gift cards for their time. To learn more, please contact Lisa at the Neurodevelopmental Family Lab at nddfamilylab@purdue.edu and mention the LEAP study in your email. Posted 2/16/21
**If you are interested in other research projects you or your family may be eligible through the Neurodevelopmental Family Lab, please visit our website: https://nddfamilylab.weebly.com/current-projects.html.
Participate in Fragile X Premutation Research at Purdue University!
Brain and Behavior Study
We are currently recruiting females between 18-60 who carry the FMR1 premutation.
Full Study details HERE
Research Resources
ClinicalTrials.gov - search by condition, i.e., fragile X Syndrome, Angelman Syndrome, Rett Syndrome, etc.
The Fragile X Research Registry - is a database of people who want to be notified about fragile X research studies. It is a confidential, convenient way for families to connect with studies and move research forward—there is no cost or obligation.
International Fragile X Premutation Registry - The International Fragile X Premutation Registry was created to facilitate and encourage Fragile X premutation research, including future medication and non-medication treatment and intervention studies that could positively impact your quality of life. Fragile X premutation-associated conditions include Fragile X-associated tremor/ataxia syndrome (FXTAS) and Fragile X-associated primary ovarian insufficiency (FXPOI).
Our Fragile X World- Registry is open, signup to learn about studies! Our Fragile X World is a research community dedicated to gathering practical information about the experiences of individuals with fragile X syndrome and their families. We conduct studies and share findings in order to advance science, improve professional practice, and impact policy.
SPARK - Today we simply don’t know enough about autism. SPARK—a landmark autism research project—aims to make important progress possible. SPARK stands for ‘Simons Foundation Powering Autism Research for Knowledge,’ and the mission is simple: we want to speed up research and advance our understanding of autism to help improve lives. If you or your child has a professional diagnosis of autism spectrum disorder, learn more about SPARK here.
As autism is a spectrum, researchers need many people with autism to participate in all types of research. Until now, only a small number of individuals and families affected by autism have ever participated in research. SPARK wants to invite the entire autism community to dramatically expand its participation.
SPARK will provide researchers with medical and genetic information from tens of thousands of individuals and families affected by autism. These data will power important new research that aims to advance the understanding of autism and provide meaningful information and resources to participants.
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