Newsletter Sep/Oct 2023

UPCOMING EVENTS

December 2
9:00 AM
Board Meeting

December 20
7 - 8 PM
Sip & Chat

January 17
New Time!
Noon to 1 PM
Sip & Chat

February 21
Noon to 1 PM
Sip & Chat

February 26 & 27
20th NFXF Advocacy Day
Washington, DC

March 20
Noon to 1 PM
Sip & Chat

April 17
Noon to 1 PM
Sip & Chat

May 15
Noon to 1 PM
Sip & Chat

June 19
Noon to 1 PM
Sip & Chat

Bid to Support the NC Fragile X Foundation

Spend Christmas Week in the Smokies!

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If you’re looking for a Christmas retreat and possibly a white Christmas, you can support the foundation by bidding on a one week Christmas vacation in Pigeon Forge. Laurel Crest Resort is a cozy country haven In the foothills of the Smoky Mountains just a mile from the action of Pigeon Forge but is far enough away to offer rest and relaxation. The surrounding mountains, forest and beautifully landscaped grounds reconnect you with nature and provide a wonderful Christmas respite from the outside world.

The package includes a 1 week hotel stay for 2 at Laurel Crest Resort, 2628 Laurel Crest Lane, Pigeon Forge, Tennessee, December 21 – 28. Read more details here. All proceeds will be donated to the NC Fragile X Foundation.

Bidding opened on eBay Monday, November 20 and closes in 10 days from that date!

The Impact of Hyperarousal & Sensory Symptoms in Fragile X Syndrome

The more extreme behaviors of people with Fragile X are often brought on by hyperarousal (HA) and sensory symptoms (SS) that go undertreated by medical and educational professionals according to a new study and its authors – NC Fragile X Foundation’s own Dr. Ave Lachiewicz, Deby Burgess, Kristin Burgess and nationally noted Fragile X occupational therapist Tracy Stackhouse – among others.

Published in the Journal of Autism and Developmental Disorders in October 2023, the paper calls for practical solutions and adaptations to avoid distressing behavioral reactions that might include mild to severe attention-deficit/hyperactivity disorder, anxiety and aggressive behaviors resulting in what one author simply calls – meltdowns.

“People with Fragile X are often really sensitive to their environment, picky about clothes and textures and they get upset too easily over these things,” Dr. Ave Lachiewicz explained. “We started looking at how to settle these kids down without relying solely on medications.”

These behavioral issues are often triggered by a variety of stimuli and environmental situations such as loud noises, crowded rooms, bright lights or simply too much peripheral activity. Behavioral reactions to these types of conditions are unpredictable and may quickly escalate the negative impacts of SS and HA exponentially – creating an “explosive” behavioral reaction in people with Fragile X.

Therapies in Addition to Medication

In response, educators and medical professionals often treat these symptoms as behavioral problems the same way they might a student with Attention-Deficit/Hyperactivity Disorder (ADHD) and prescribe something such as Ritalin when the problem and the solutions are quite different. The research article emphasizes using practical, non-medicative therapies, simpler solutions and environmental adaptations to control stimuli when managing HA and SS among people with Fragile X such as:

  • Using noise cancelling headphones
  • Wearing sunglasses or baseball caps for light sensitivities
  • Eating in quiet rooms instead of large, noisy cafeterias
  • Redirecting them on the next step or task of the day – helping them move on
  • Minimizing overstimulating environmental activity, noise or light
  • Providing sensory integration therapy (SIT) and sensory diets
  • Offering occupational and physical therapies
  • Increasing recreation

The research noted that SS and signs of HA were found in males far more frequently by clinicians after age three, peaking between four and 12 years old which persisted thereafter. It also found that after age 13 non-medication therapeutic methods decrease while there is a simultaneous increase in psychotropic medication use.

Distinctions between Typical Classroom Behavior and HA/SS

The study begins to establish the distinction between typical classroom behavioral issues from the more extreme reactions found in Fragile X. Doctors and school systems do not generally have a good working knowledge of these issues and the research team sees a need for broader awareness and understanding of Fragile X and SS and HA among these professions.

The research calls for comprehensive identification of needs and appropriate non-medication therapies for HA and SS related behaviors along with traditional medication as needed and calls for continued research of these issues.

Impact on Family Life

Parents participating in the study said that behavioral episodes often interfere with their family’s day to day activities such as going to the grocery store, preparing meals, getting ready for school, etc. It also limits participation in everyday activity and going out the community for people with Fragile X who may become isolated.

“This can possibly be avoided with a better understanding of SS and HA and by focusing on the source problem,” Deb Burgess, long-time advocate and Foundation volunteer who raised an adult son with Fragile X, said, “Bright lights, too much noise or simple overwhelming activity in their surroundings or even what they are being asked to do – get ready for school, go to lunch or even ride to the grocery store – can be the source of the problem.”

“It’s a constant trade off, be clever enough to read the tea leaves,” she said, “It usually involves some incentive even if what you’re doing is intended to benefit them.”

She also advises parents not to feel so responsible or guilty for encouraging new experiences and for not doing everything for your child, “Don’t hold yourself to such a high standard,” she explained. “After a meltdown, they are often ashamed and know they’ve disappointed you. They can become very tender and apologetic as they seek forgiveness. Take advantage of these times to build trust, and to restore and strengthen the relationship.”

Read the entire study here.

Fragile X Family & Friends Picnic a Success!

This year’s annual Family & Friends Picnic was a HUGE success – bigger and better than ever! Held in October on scenic Lake Macintosh in Burlington, it was a great sunshiny day to reunite with our NC Fragile X community and was full of friends and fun, good barbeque and the all new NCFXF Olympic Games!
It was a good day to see old faces and welcome new ones, mingle with other families, and learn about some the resources available to the Fragile X community.

A special thanks to Tim Field and his family members for organizing the picnic and making it such a success!

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20th NFXF Advocacy Day, Washington, DC
February 26 & 27, 2024

The 20th National Fragile X Foundation (NFXF) Advocacy Day is planned for February 26 - February 27, 2024 in Washington, DC. Nearly 100% of Congressional offices are accepting in-person meetings. Congressional offices are now offering a hybrid option with some Advocates in-person and some virtual in the same meeting.

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Training

Training will include a combination of mandatory online self-paced training ahead of time and group training/preparation at the Hilton Arlington Towers Hotel on the afternoon of Monday, February 26. They will also be hosting a virtual Zoom meeting earlier in the month of February for new or returning advocates.

Agenda (specific times will be shared closer to the event)

  • Monday, February 26th: Afternoon training and reception
  • Tuesday, February 27th: Meetings at Capitol Hill

Register for the event here.

Scholarships

The National Foundation has limited scholarship scholarship funding for individuals, families, self-advocates or siblings who have not previously attended a NFXF Advocacy Day in Washington, D.C. or advocates who might not otherwise be able to attend due to limited financial resources. You can learn more about the scholarships from the National by clicking here.

For our North Carolina families, the North Carolina Council on Developmental Disabilities has scholarship funding through the Jean Wolfe Rossi for Participant Involvement Fund. First in Families of North Carolina also has funding to attend conferences. Please e-mail First in Families of North Carolina at info@fifnc.org to inquire about eligibility.
Finally, if your family member is on the North Carolina Innovations waiver, funding for attending the conference is available through the waiver. Please contact your MCO care coordinator for details. Please apply early. Certain deadlines apply to all of the scholarships.

North Carolina Delegation

If interested in attending as a North Carolina delegate, please contact Steve Strom at steve@ncfragilex.org.

Sip & Chat – Same Time, Same Place in Dec

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2024 Upcoming Dates
for Monthly Sip & Chats
Wednesdays at Noon

January 17
February 21
March 20
April 17
May 15
June 19

"The FX Sip & Chat is a welcome time of connection, camaraderie, and resources. We laugh. We commiserate. We share resources. It’s time well spent."

The December Sip & Chat call will be the 3rd Wednesday of the month, December 20 from 7 to 8 PM. Please register in advance here.

The monthly Sip & Chat began with a simple idea – to provide a regular opportunity for members of the North Carolina Fragile X community to connect. There are no agendas and no speakers. Just a safe space for open discussions on the daily successes and challenges people experience in their Fragile X worlds.

With attendance ranging between four and eight, participants have shared nuggets of information as well as insights from their experiences. Many of these "gems" have been captured in a rolling document that is added to each month. Anyone can view it using this link: Sip & Chat Notes. Some of the resources are also shared on the NCFXF Facebook page here.

Moving to a New Time in January!

After six months of evening Sip & Chats, we are shifting the time to lunchtime. Note the NEW TIME will be Noon - 1 PM, beginning in January. At the end of these dates, we will review participation levels and revisit a plan for the following year. Mark Your Calendar!

This initiative is made possible by volunteers. If you would like to see a different time or day offered, feel free to provide feedback via email to steve@ncfragilex.org

Update: Innovations 1915(C) & Appendix K Flexibilities

NC Medicaid has submitted a request to the Centers for Medicare and Medicaid Services (CMS) to launch the 1915(i) service. Additionally the State has requested that some of the Innovations waiver services and supports created in the Appendix K flexibilities be made permanent. Those services are for home delivered meals, telehealth, waiver cap increase and rules regarding relatives as providers. These changes will be effective March 1, 2024. In the meantime, all Appendix K flexibilities for the Innovations waiver have been extended from 11/11/2023 to 2/29/2024.

Tailored Plans Coming in 2024

The long awaited launch of tailored plans is now scheduled for July 1, 2024 after the Secretary of the North Carolina Department of Health and Human Services reduces the number of MCOs from 6 to 4. Sandhills will dissolve and all of the counties in the Sandhills region will become part of Eastpointe with the exception of Harnett County which moves to Alliance Health. In addition, Davidson County moves to Partners and Rockingham County moves to Vaya. To complete the reorganization, Eastpointe and Trillium will merge to form a new MCO.

The reorganization is expected to ensure a strengthened and sustainable behavioral health system and is slated to be completed in the 1st quarter of 2024.