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An essential part of meeting the needs of a student with Stickler syndrome is to establish open communication with the family of the affected child. Stickler syndrome is a progressive disorder, and parents will need to feel that they can approach school personnel and teachers openly and honestly about their student’s condition. It is also important to note that parents and other family members such as siblings may also be dealing with complications from Stickler syndrome. This may affect the student’s life in and out of the classroom as other family members deal with surgeries, fatigue, pain, visual impairments, and/or any of the other complications that can arise from having Stickler syndrome. 

The following information can help strengthen the home school relationship and is meant to help teachers in considering what modifications and accommodations may need to be made, and what considerations may need to be taken to assist a student with Stickler syndrome in maximizing his or her potential in school.  In addition, it may be helpful to review the IEP/504 Plan information posted on our web site.

What is Stickler Syndrome and its Common Symptoms

Child Learning Needs: Questions for Teachers to ask Parents

Classroom/School Campus Accommodations

Absences & Emergency Care Plans

Physical Activity, Physical Education, Recess, and Field Trip Accommodations

Developing Social Skills/Encouraging the Concept of Self-Advocacy

Below is Further Reference Information for Teachers:

• The Arthritis Foundation’s website is a good source of information on how to help students who have Juvenile Arthritis (JA), joint pain, and joint inflammation. There is a section on School Success that may be a helpful resource for parents, teachers, and students. Also, a free pamphlet for teachers on how to care for and accommodate students with Arthritis is available for order on this page as well: http://www.arthritis.org/ja-school-success.php

• Your state’s DeafBlind specialist  through each state's DeafBlind Technical Assistance Projects can provide comprehensive information and support to teachers even if the student does NOT have a combined vision and hearing loss.  The DeafBlind specialists are often experts in rare syndromes (i.e. Marshall, Stickler’s).  They can also provide great information and accommodations (vision, hearing, and physical) to school staff. Each state should have a Federally funded DeafBlind Technical Assistance Project, and most have websites that can be found by simply doing an internet search with your state’s name and the words DeafBlind Technical Assistance Project.

• The special education advocacy website Wrightslaw includes a “Teachers, Principals, Paraprofessionals” section and also has a wealth of archived information on how to accommodate students with special needs and how to communicate effectively with parents: http://www.wrightslaw.com/info/teach.index.htm

**The Stickler Involved People (SIP) website also has a list-serve. Many people with Stickler syndrome are part of the SIP-List and it may be helpful to pose questions to the group here. Please keep in mind the issue of privacy and anonymity as it pertains to students when posting a question to the group. To join the list-serve, visit http://www.sticklers.org/sip2/content/view/1/3/. Here you will find rules for the list-serve and directions for how to join.

 


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