Fragile X and Puberty & Sexuality | NFXF (original) (raw)
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- Fragile X 101
* Fragile X 101
* Prevalence
* Signs & Symptoms
* Genetics and Inheritance
* Testing and Diagnosis - Fragile X Syndrome
* Fragile X Syndrome
* Fragile X & Autism - Associated Conditions
* Premutation
* FXPOI
* FXTAS
* New Developments - Xtraordinary Individuals
- 31 Shareable Fragile X Facts
- Fragile X Info Series
- FRAGILE X MASTERCLASS
- Knowledge Center
- Fragile X 101
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- Resources for Families
- FXS Strategies by Topic
* Adulthood
* Autism
* Behavior
* Daily Living
* Females
* Medications
* Physical & Medical Concerns
* Fragile X and Puberty & Sexuality
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- Premutation Topics
* The Fragile X Premutation
* FXTAS Resources
* FXPOI Resources
* Reproductive Resources - Newly Diagnosed
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* Research 101: What is Research?
* STX209 Reconsent Project
* International Fragile X Premutation Registry — For Participants
* Participate in Research
* Original Research Articles
* FORWARD-MARCH
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- Printable Resources
- Treatment Recommendations
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- NFXF Data Repository
- International Fragile X Premutation Registry — Research Requests
- FORWARD-MARCH Registry & Database
- NFXF-Led Patient-Focused Drug Development Meeting
- Marketing Your Research Opportunities
- Treatment Recommendations
- Find a Clinic Near You
- NFXF Research Awards
* Randi J. Hagerman Summer Scholars
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Fragile X and Puberty & Sexuality
Fragile X and Puberty & SexualityDany Petraska2023-09-07T13:35:25-04:00
Fragile X and Puberty & Sexuality
Depending on their age, it’s necessary to approach teaching children about relationships, the difference between public and private, body changes, feelings and emotions, reproduction, STDs, birth control, and how to keep themselves safe. You may even find you need a refresher for yourself before approaching the subject with them.
Webinars
Missy Zolecki2023-10-26T09:43:35-04:00
Reproductive Health — Webinar
Missy Zolecki2023-10-26T09:43:35-04:00
Drs. Heather Hipp and Victoria Wilkins joined us for an informative webinar on the topic of Reproductive health. This is a broad topic, covering the physical and emotional components of areas like puberty, sexuality, reproductive options, and family planning.
From Our Blog
Marcia Braden2024-12-02T15:16:10-05:00
Teaching Pro-Public Behavior: Public or Private?
Marcia Braden2024-12-02T15:16:10-05:00
How do we prepare our children to access their communities, without the risk of their being exploited, showing affection in inappropriate ways, using sexual language that may be misconstrued, or touching body parts that could bring legal action or, at the very least, a disgruntled public?
Puberty
Puberty is the time in a person’s life when their body starts to transition into adulthood. Puberty can come with a lot of feelings, emotions, and changes, making it a confusing and challenging time for the person going through it, and their loved ones. It can be strange to experience these changes and not know why it is happening.
Nine Tips to Help You Discuss Puberty With Your Child
1. IDENTIFY WHO SHOULD LEAD THESE CONVERSATIONS
It can be uncomfortable to talk about these things with a parent (or anyone!). If a parent isn’t comfortable with these conversations, identify someone your child may be comfortable with to discuss these sensitive topics. Engaging a professional with expertise in this area may help guide the discussion. This person should be comfortable answering questions and speaking openly.
Sometimes speaking with someone who has experienced the same things during puberty is most helpful. For example, a young girl may prefer to talk to someone who has already had their period.
2. FIND RESOURCES THAT WORK FOR YOUR CHILD
Does your child prefer to read books, look at pictures, watch a video, or listen to someone speaking? Find a resource on puberty that helps them learn in a way they prefer.
Many of the following resources are from the articles “How to Help Teens With Special Needs Navigate Puberty” and “Puberty and Your Child with Autism.” We are not endorsing any one resource specifically:
- Books by Terri Couwenhoven, MS, CSE, a certified sexuality educator specializing in creating programs and resources for people with intellectual or developmental disabilities, including their families and support professionals. See her books on Goodreads or Amazon.
- “Boys, Girls & Body Science: A First Book About Facts of Life,” by author Meg Hickling and illustrator Kim La Fave.
- “What’s Happening to Me? An Illustrated Guide to Puberty,” by author Peter Mayle and illustrator Arthur Robins.
- All About Periods from KidsHealth.
- Educational materials about Puberty from MARSHmedia.
3. ENCOURAGE QUESTIONS
Questions are natural. Let your child communicate their questions to you without judgment and answer honestly. Reiterate that they can always come to you and ask questions, and they will not get in trouble.
4. USE THE CORRECT NAME FOR BODY PARTS
Teach your child the correct name for their body parts and encourage them to use those names. This is important for general healthcare purposes and safety. This will also help you accurately explain the changes your child can expect to see.
5. EXPLAIN CHANGES BEFORE THEY OCCUR
Explain bodily functions like a menstrual cycle (period) or an erection before they occur. This helps your child know these things are “normal” and they can identify them when they occur.
6. PRACTICE GOOD HYGIENE
Share the importance of staying clean. Show them how to wash their entire body and use things like deodorant, razors (if comfortable), sanitary pads, tampons, or menstrual cups. Using visuals like a list with pictures or visual schedules may help.
7. DISCUSS APPROPRIATE BEHAVIORS AND SET UP RULES
Discussing things like privacy, sexual urges, and other feelings openly is important. Consider setting up rules like going to their room or bathroom when they need private time.
8. TALK TO OTHER PARENTS & CAREGIVERS
Learn from other parents and caregivers about how they navigated puberty with their child. It may be helpful to talk with other parents who have children with Fragile X syndrome or another intellectual or developmental disability.
9. BRAINSTORM WITH A PROFESSIONAL
Speak to your child’s doctor about resources and tools they would recommend. All of our Fragile X Clinical and Research Consortium (FXCRC) clinicians are comfortable discussing puberty and encourage you to establish a relationship with a clinic near you!
Sexuality
Sexuality is a natural part of life and is part of everyone’s development. People with Fragile X have the same wants and needs as other people. Sexuality can include health and wellness, relationships, sexual orientation, desires, and gender identity (see Sexuality and I/DD). And just like everyone else, there is an appropriate time and place to discuss and act on these feelings.
See a great article about this topic from Dr. Marcia Braden: Teaching Pro-Social Behavior: Public or Private?
When speaking with someone about their sexuality, come ready to have an open and honest conversation that is developmentally appropriate. Many of the same practices when talking about puberty can be used during these conversations. It is important to teach the importance of respect and consent, again, at a developmentally appropriate level.
Some parents, caregivers, and self-advocates have questions about options like birth control. These questions are best to discuss with a doctor.
Questions?
If you’re a parent or caregiver and have questions about the information presented here, we’d love to hear from you! You can reach out to Missy Zolecki using the contact info or our contact form below.