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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
Tags: advocacy training · advocate · communication needs · IEP · rett syndrome5 Comments
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You may need to be what I like to call “Pleasantly persistent” with the school. As the parent of a child who had delayed communication abilities, it is imperative that your child learn some system of communication. You may have already started to use some system at home. Examine that method to see if some other way is similar, like sign, picture cards, whatever. An assistive technology evaluation should give you some ideas as well.
There is a poster I have seen that says “Not being able to speak is not the same as not having anything to say.” If you use the information in the Wright’s book you will find that, perhaps slowly, but surely, you will get the supports and services Emily needs.
Pam touches on a very important point. It should not be as hard as it is. Focusing on the positive methods the Wrights teach will help. An be sure to check out when your local state and Federal representatives visit your area. Ask for a short individual appointment with them. Let them know, in a non accusatory way, what you have gone through. They need to be aware of the struggle parents endure. Then write follow up letters to them, perhaps even periodically. They will start to see the reality of our lives.
Finally, stay focused on Emily. Always take time whenever you can to simply enjoy your child.
Hello to Emily’s mother from Jill Johnson. My Rett daughter was shown a means of communication 20 years ago, and has since completed her secondary school leaving certificate, and is planning to take an Arts degree at university.
Nothing happens quickly - indeed it is all a very slow process - but the important thing is that it happens, and our daughter can express herself to us and others.
I’d be happy to discuss this with you and pont you to some sources if you wish. My addr is
jill.johnson@tpg.com.au
Cheers
Jill
As a parent advocate, from emotion to Advocacy is a very valuable tool. Attempting to communicate your frustrations with school staff and their attorney makes as much sense as asking your dog how he thinks that makes you feel after you catch him messing on the carpet. Quoting IDEA and ADA law to the district admins and their attorney will not enlighten them and suddenly cause services to begin. We were recently informed that the law no longer requires parents to sign a waiver of invitation if the school district happens to mail an IEP invitation out on time (More than two or three days notice). Rather than pointing out the obvious, I thanked her for keeping me updated on Special Education Law. Regardless of our children’s disability, they do not have a voice in IEP meetings. I would have never dreamed that my child’s best expert advocate would turn out to be my wife and me. Once you begin requesting a copy of the IEP meeting minutes, the information will align close enough to the truth that their own documentation will begin to express the concerns that frustrated parents have trouble articulating. You will be a great Expert Advocate!
Dear Jill - Thanks for taking the time to post a comment about your daughter’s experiences - as you know, learning to communicate is the key and the challenge.
Congratulations to both of you - I know it’s been a long journey. ~ Best wishes, Pam Wright
Although it is always helpful to have an advocate with you at these meetings, it is the responsibility of the education department you are dealing with to identify and provide appropriate services for your child. After all, we, as parents, are not all experts in education!
At times, a request for change in methodology is necessary. Some districts will not list specific methodology on an IEP, but in this case, you may be able to get your daughter trained with ABA. ABA can often assist the non-communicative child in developing meaningful language. It is most usually used with autistic children (and Rett Syndrome is on the spectrum).
Talk to someone specializing in children with Rett Syndrome (neurologist, neuropsychologist, etc.), and ask what method of helping children achieve communication skills is most appropriate. Then, armed with a letter from this professional, go back to your district and re-open your daughter’s case.
Don’t take no for an answer, and if you don’t get satisfaction go forward with mediation.
Good luck!
Sharon