- Fragile X
- Treatment & Intervention
- Support the NFXF
Back-to-school can be a time of high anxiety not only for children but for parents and staff, too. With some thought as to what your child will need and planning that involves your child and the school, the transition can go smoothly and successfully. Spend some time looking at each of the items to see if and how it should be modified for your child.
Jayne has been a member of the NFXF team since 2007 and currently serves as the director of support services. She has two children—one, an adult son with Fragile X syndrome, the other, a daughter who is an occupational therapist. In addition to assisting wtth the development of the NFXF’s “Adolescent and Adult Project,” Jayne authored the book Transitioning ‘Special’ Children into Elementary School and is the editor for the book Children with Fragile X Syndrome: A Parents’ Guide. She is the co-leader of the Colorado Fragile X CSN group. Jayne likes to read, enjoys photography, and goes for a walk every day.
Holly started was the LINKS program assistant for the National Fragile X Foundation in 2010 and became the LINKS program coordinator in the fall of 2012. In early 2014 the LINKS Support Network was rebranded as the Community Support Network (CSN). Holly has two children, a son and a daughter, with Fragile X syndrome. In 2006 she founded the Central Illinois Fragile X CSN group to bring families together and raise awareness about Fragile X in the region. She currently acts as co-leader of the group. Holly has been a speaker at several conferences, including the NFXF’s international conferences, on topics such as “Working with Your School,” “Media Relations,” “Fundraising,” and “How to Talk to Your Child’s Classmates About Fragile X.” The last of these was made into a podcast for the NFXF.
A Positive Student Profile (PSP) is created by the parents to provide a “snapshot” of their child. The PSP is a helpful way for teachers to get to know your child at the beginning of the school year – or during the IEP process. A PSP can be easily updated each year and look a variety of different ways. The most important thing about the PSP is that the profile focus on what your child can do!
Knowing these 10 things will help bring out the good and minimize the not so good! The #1 thing teachers should know about students with FXS is that they are prone to hyperarousal and anxiety. It is how their nervous systems are wired. Most recommendations that follow are geared to maximizing focus and cooperation by minimizing hyperarousal and anxiety.
This Guide is intended for classroom teachers who may have little or no exposure to Fragile X syndrome (FXS). Our goal is to help make the teaching and learning environment from preschool through high school more effective, more efficient, and more rewarding for teachers and the student(s) with FXS who come under their care.
Sending your child off to Kindergarten is a big transition for both your child and for you. You should know that what you are feeling is not that different from parents of typical children feel. All parents are anxious about letting go. They want their child to have friends, to be included in games at recess and have somebody sit by them at lunch. All parents want the teacher to like their child and understand them. Every parent wants their child to succeed in school.
Going to school takes preparation, so do whatever you need to reduce anxiety for you and your child. These ideas will get you started.
Find lots of great ideas for all ages, including ideas for those entering grade school, middle school, high school and for home!
After you have completed all the activities to transition your child into school (visuals of the important people and classrooms, walked through the school, planned what your child is going to wear and what you are going to do after school, and the teachers and aides in the class have been educated about Fragile X syndrome.) you realize, that is just the beginning! Don’t forget to spend some time on developing strategies for the daily transitions that occur while your child is at school.
Creating a daily schedule can help bring a sense of control over the day. It provides a clear way to show what the day will be like. Daily Schedules can be in a variety of forms: written out, actual photos, or PECs – Picture Exchange Systems, such as Boardmaker and can include a place to check or cross of each part of the day as it is complete.
A sensory diet is an occupational therapy intervention strategy devised to attain and maintain appropriate arousal states throughout each day. A sensory diet can help maintain an age appropriate level of attention for optimal function to reduce sensory defensiveness. Included is a sensory diet template and sensory activities.
View Sensory Diet
Talking to your child’s classmates about Fragile X Syndrome and how it affects your child will help your child’s classmates understand FXS & disabilities in both a factual and personal way. It is also a great opportunity to help foster friendships, compassion and set your child up for success.
These Documents were developed by the clinical committee of the Fragile X Clinical & Research Consortium (FXCRC) and represent expert consensus and not evidence-based studies. When these guidelines were written there was an attempt made to review everything in the literature on the respective topics, however, there is not much literature to review on many of them. This lack of published data was one reason why this project was started — as an attempt to have at least some form of guidelines for best practices generated by consensus of all the physicians working on Fragile X, even if no studies existed.
Sometimes the opportunity will present itself to talk about FXS to your team or to the entire faculty. You can find important facts and references from the NFXF website. Whether you are talking to your team or to the entire school faculty it’s helpful to write down the information you want to share. Keep it personal, talk about what you know and how FXS impacts your child and life.
You will want to have a discussion with school personnel – there are steps you (and your school) can take to help prepare your child for emergency drills. Some schools cannot let you know when a fire, tornado, earthquake or lockdown drill will take place. Often times the teachers are unaware of them as well. If you feel your child may respond negatively, check with your physician about submitting a letter requesting the dates/times be made known in advance. Your child should be encouraged to practice these drills to prepare for a real emergency. Knowing what to do when a drill happens may help to reduce the anxiety of the situation should the real thing occur. Realize the drills may be different than the real thing and be sure to put a plan in writing.
One of the many things you may need to think about is if, how and when your child may be disciplined. This in turn raises the question of whether any seclusion and restraints are used in your school. In the continuing absence of a national law covering all schools in all states, it is helpful to know what your state’s laws say on the topic.