School & Day Programs
School is very exciting! It can also be a time of additional stress and worries for parents and caregivers of children with Rett syndrome. We want to help make this school year as successful as possible!
Read words of wisdom and advice from parents who understand.
Build Your Team
Building the best team for your child’s school success begins with an understanding of the perspective of each person on your child’s IEP team: the professionals performing assessments, the educator, the administrators, and of course – YOU. This carefully prepared presentation will help you understand, strategize, and advocate for her success.
Educate Peers and Parents
Helping others to understand your child is important. Consider sending a letter home with the children in your child’s classroom. Here to view a few examples written in adult and child-friendly language.
“All About Me” books have become a popular way to share information. For the older child, perhaps a PowerPoint presentation is more suitable.
Another great way to educate others is to share the Rettsyndrome.org children’s informational coloring book [PDF]. It is an activity that is not only educational but also fun and a great casual way to share information.
Educate the Educators and Therapists
- Educate your child’s teachers, therapists, nurse, etc. about Rett syndrome by sharing excerpts from the Rett Syndrome Handbook that apply to each discipline.
- Be sure to help your child’s educators, therapists and caregivers know how to keep your child safe, healthy and happy.
- Request that all teachers, therapists and nurses register for the Rettsyndrome.org Educators Network in order to learn best practices, tips, tricks, strategies and more.
- Ask your child’s teachers and therapists to attend the RettSyndrome.org Annual Family Conference.
Selecting the Right Educational or Day Program
The goal in selecting the right educational or day program for your child should be to provide her with the most stimulating program in the least restrictive environment, taking into account each child's own special needs and personality. Girls with Rett syndrome can be seen in classrooms of all types, ranging from self-contained special education units to full inclusion in regular schools. Keep your child at the center of this decision-making process.
It is possible that more than one placement would fit her needs. For instance, she may benefit from being in the early childhood classroom twice a week and a "regular" preschool twice a week.
Tips for School [PDF]
Finding the Right School Placement [PDF]
Child Advocacy Resources
There are funded agencies in every community that make it their business to help you answer questions as to the best programs in your community and the laws that protect you. Please contact your Rettsyndrome.org Regional Representative for a referral in your area, or follow the link here to find the parent information center closest to you: Technical Assistance Alliance for Parent Centers
If you don’t agree on the delivery of services, ask the therapists what they recommend and why. Keep a "Let’s see what we can do to help my daughter" attitude. Ask how getting less services helps your daughter. Provide written documentation of her need for therapies. If the excuse is used that she is "not making progress" in therapy, use the argument that in RS, where loss of mobility is likely, "maintaining” is progress.
How is placement determined and what are the options in public schools? [PDF]
Day Habilitation Programs and Alternatives
In most cases, education in the public schools can continue until at least age twenty-one. Around the age of fourteen, the public school system begins the process of transition to adult life and adult services with a transition IEP. The options available will depend in large part where you live. Adult programs are not mandated and therefore, availability is tied to local funding. Your state Developmental Disabilities Agency should be able to assist you with identifying appropriate programs.
If a day program does not exist in your area, it may be possible for you to start a local program, pooling the energy of other families of adults and accessing local resources.
While there are a limited number of jobs available, some women do have supported employment, either through a workshop or other habilitation programs. There also may be many volunteer opportunities in your community that your adult child may thoroughly enjoy, with the proper support of an aide or assistant. Some parents have suggested things like delivering the mail at an office, taking tickets at a movie theater, playing with pets at the Humane Society. Be creative!