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Advocating for a Child with Communication Problems

07/11/08
by Wrightslaw

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 shallconsider 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

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15 Comments on "Advocating for a Child with Communication Problems"


stephanie
05/04/2015

Our school district is a “bad” one. They have already denied the evaluation for a AT. They said in our last Ard (with attornies/advocates) that this is based off of their screener. Where can I find information on what the screenings should actually be based upon? please and thank you! So far I hear all about why it will help and how to ask, but I haven’t found anything pertaining to screenings or our current roadblock. Thank you.

CINDY
01/20/2015

If a child has a significant hearing loss that interferes with the ability to spell and limited understanding during lectures, what should I ask for from the school to assist my daughter? She reads lips more than she uses her hearing.

Mike
08/12/2014

Who “owns” my daughter’s “voice”?
My 9 yr old daughter uses an Ipad with Proloquo2 to communicate.
The school provided the Ipad 2 years ago. Over the last two years as she has advanced, Proloquo on the Ipad has been customized with added buttons, folders, family outing pictures by school SLP, Childrens Hospital SLP and us at home.
I was told in an IEP meeting that I could not have access to the sign on and password for the Ipad in order to back up Proloquo settings. So I posed the question of what would happen if we moved to another district? I was told that the IPad would have to be turned in and we would have to start over at the new school.
This would devastate my daughter’s ability to communicate, essentially taking her voice away from her. Has anyone come across this situation yet? Thank you in advance.

Martha
12/01/2011

It’s been three weeks ago I had the IEP meeting for my son(5 yrs old) and I haven’t sign the IEP document.He just started in August 2011 kindergarten class and had three injuries (bitting from friends)for three times.They wanted it to keep him in the same classroom and I requested to move him to a different.They did it. His new teacher has been very resistant and evasive to be in communication with me.Also,he needs a lot of help with the potty train, new behaviours are arising when he is getting into the bus (taking off the seat bealt,socks,shoes and screaming)which I informed the teacher four weeks ago and she did not reply to my concern.Also,she misses a lot of classes.In the IEP I reported that the approach of the program he is having right now is not impacting in my child and he is not grasping it at all.

I’m considering homeschool. What language should I use to inform the IEP team and also to get funding from the district where we belong?

Adrianna
03/18/2011

Assistive Technology…The school had a device, A.C.G., called a McCaw which sat in the corner gathering dust when my daughter was in grade 1-6. I decided to teach her “a basic toddler’s sign language” with the help of an organization that helps parents teach children with disabilities how to do basic sign. My daughter is Mentally Challenged with Hypotonic Muscles and had no real verbal language, just a few words. So, I taught her with a 60 word sign capability. The School Administration told me to “STOP teaching her sign”! I asked why and they repeated “Because not everyone knows sign”. REDUNDANT so I did not say anything.
I finally bought her an A.C.G. after saving for 6 yrs. The teachers do not know how to use it, even though they have the same one??? So, how is my daughter supposed to communicate??