(Moved from the Community Helpline)
My 9 year-old daughter Emily has Rett Syndrome. She is a high functioning child but she does not have any means of communication. Unless my husband and I can get an advocate to attend IEP meetings, we haven’t been able to get appropriate services for her. Which of your books will help us? Will I understand the language in these books?
In our experience, many or most school people don’t know how to educate a child who can’t communicate. Some believe that if a child cannot communicate, the child is unable to think or learn. If you are familiar with Helen Keller’s story, you know this belief is dead wrong.
A few years ago, we did several legal and advocacy programs at the National Rett Syndrome Conference. We were astounded at the number of parents who were being “encouraged” to keep their children at home, with no special education services.
The Individuals with Disabilities Education Act (IDEA) includes a section about developing IEPs for children with “special factors” including special factors for children with communication needs. For example, the IEP team shall “consider whether the child needs assistive technology devices and services.”
As to your question about which book will teach you how to be an effective advocate for Emily, you want Wrightslaw: From Emotions to Advocacy. This book is designed to teach advocacy skills to parents. You learn about long-term planning, how to keep your child’s team moving on the right track, how to monitor your child’s progress, how to create paper trails and how advance preparation will help you get quality special education services. We wrote this book for parents – from those who are just beginning the special ed process to those who have been negotiating on their child’s behalf for many years.
Try to attend one of our Special Education Law and Advocacy training programs. In these programs, parents learn information and skills, step by step. Most say they were energized after the program. Schedule.
If you cannot attend a live Wrightslaw program (since your child has complex needs, this a possibility), you or an advocacy group in your area can get the Wrightslaw Special Education Law and Advocacy WebEx Training program on CD.
The Wrightslaw Special Education Law and Advocacy WebEx Training program is 6.5 hour program that includes all the content of our day-long program, and more than an hour of bonus content. The program is divided into four sections: special education law; other laws that are used to protect the rights of children; and two programs about advocacy strategies. Each section several topics. Click here for the program description.
On a personal note, I wish this process was not so so difficult for you and your family. I know you have your hands full. The last thing you need is to fight with the school to get the services your child needs. But that is the way things are, at least for now. Our goal is to mobilize parents and teachers to change the system so it is responsive to parents and children. We’ll need your help. ~ Pam