< Back

You Are Not Alone: How Parents Can Join Forces to Become Advocates for Students with Dyslexia

Categories: Learning Disabilities, Parenting, Public Policy/Advocacy, Webinars

Click the video window above to access the recorded webinar conversation and accompanying slides. Download the PDF slide presentation. For parents seeking help and accommodations for their children with dyslexia, navigating the education system can be a challenging and often isolating experience. The good news is that thousands of parents are discovering that they are not alone.
During Learning Ally's live online event, moderator Doug Sprei launched into engaging conversation with experienced moms Deborah Lynam, Liz Barnes and Kathy Stratton - all parents and co-founders of the fast-growing Decoding Dyslexia movement. As Deborah, Liz and Kathy shared their personal stories, parents across the nation learned about the power of networking and communication. The group also gave an inside look at how Decoding Dyslexia is becoming a national force for parental advocacy and systemic change. Dozens of questions were submitted by our audience and Deborah, Liz, and Kathy answered as many as they could during the live session. In addition, here are some questions sent in that were not addressed during the presentation: Q: Can we get a more detailed list of the assistive technology used to help your children? Liz: Read2Go, Learning Ally, Neu-Annotate, iPages, Merriam-Webster Dictionary, and Dragon Dictation are the main ones. Kathy: There are lots of technologies that can assist students with dyslexia. The key is to figure out what learning need you are addressing – spelling, decoding, comprehension, written output, etc. and then finding the right fit for your child. It’s a matter of trial and error to see what works for your child and what he/she feels comfortable using. My son is writing a blog at www.bdmtech.blogspot.com in which he provides reviews and video demonstrations of various technologies that he thinks might help students with dyslexia. Q: With the research and facts now available to school districts, that 1 in 5 children are on the spectrum of dyslexia, why is it so difficult to get boards of education to focus on this problem and ensure their districts have the necessary tools and training for teachers? I was an elected board member who prior to that advocated (as a volunteer) for special needs parents and children; I was bullied and harassed and ultimately forced to resign from the board because of my advocacy for my child and other special needs children.  What will create change at the district level?  Deborah: I was also a local BOE member and did at times find it challenging to wear my parent and special education parent group leader hats. I believe that parent groups can have a positive impact but it may be much smaller and slower paced than we would like. A steady persistent dialogue about LD with BOE members, administrators and teachers can begin to chip away at the myths but truly a change needs to be seen at the college level. These individuals need to learn about the current research and science of dyslexia when they are earning their degrees. DD-NJ advocates for this in our state. Q: Liz, how did you get the private school on-board?  My daughter is on an IEP and attends a private school this year but they said they can't meet her needs.  I wonder if she should return to a public school setting?  Liz: The private school my daughter attends is specialized in dyslexia and other language-based reading disabilities, so I didn’t need to get them on board. There are several students at her school who came from other private schools and found that a private school isn’t necessarily any more equipped or trained to help dyslexic children than a public school, unless it specializes in learning disabilities. Now you say you have an IEP, is that from your public school? I haven’t heard of a private school creating IEPs, but if a child is placed in the private school as the result of an out-of-district placement from your public school, they (the private school) usually will try to make sure it is something they can fulfill. I know at my daughter’s school, several students attend as a result of due process agreements or court rulings and therefore they have IEPs. Her school’s teachers create the goals and objectives and provide the narratives and the public schools accept them. You certainly can return to your public school, but you should get in writing the type of services they would provide. Often times, it will still not be what your child will need and you will have to hire your own tutor and/or therapist (speech or OT), depending on what your child needs and if he or she qualifies for the public school services. You’ll have to compare the options and compare the costs to see what makes the most sense for you and your child. Q: Listening to this sounds like my life. I have an almost 14-year-old who reads at a 3rd grade level. She has been on an IEP since kindergarten. I was told that they couldn't teach her the way she needed because there wasn't a greater need. They didn't want to pay for what she needed to learn better. How do I handle a situation like this? Deborah: It is very sad when you feel your concerns and/or your child’s needs have been dismissed. If your child has been classified since kindergarten with little progress in reading, you might consider requesting additional evaluations or possibly seek a private evaluation to determine her precise areas of need. Ask that specific recommendations be included in the report outlining the type of instruction and supports that are needed. If the district then denies these recommendations, as Kathy mentioned in the webinar, request that the district provide documentation for why they won’t abide by the recommendations. Then possibly consider utilizing your procedural safeguards, such as mediation or due process, if you can’t get more appropriate IEP goals and services in place. Kathy: If a school district tells you that it cannot teach your child because there isn’t a greater need, ask them to put that rationale in writing. The “I” in IDEA, and IEP stands for “individual.” The school has an obligation to design a program to meet your child’s unique needs whether or not others have the same needs. If you don’t get satisfaction when you reach out to the school and you see that your daughter is not making adequate progress, you can seek resolution through a third party. The state department of education has a process for filing a complaint or you can file for mediation or due process. Wrightslaw has good information about taking these steps, or you can reach out to a special education advocate/attorney for advice. Q: Liz, you stated your daughter had a speech issue.  My son stutters and I feel it is connected with his dyslexia.  Has your daughter's speech improved?  If so, did it improve on its own as she learned to cope with her dyslexia or did you seek additional speech therapy? Liz: My daughter’s speech issues included articulation problems, where she literally could not make certain sounds, which resulted in her substituting those sounds with different sounds making completely different words come out of her mouth that didn’t make sense. It was very frustrating for her and for me. We had her evaluated by a speech-language pathologist to assess her exact problems and started speech therapy at the age of 4 ½. She continued with speech all year long (summers too) and after 3 years, her articulation seemed to be fixed. However, she still had other language issues as a result of her dyslexia and auditory processing disorder, so we’ve continued with her S-L therapy during the school year (no longer in the summers) ever since. She’s now going into the 6th grade and I think her speech-language therapy has really made a difference to improve her working memory, executive functioning, sequencing and such (along with her Wilson tutoring and in-class support). I highly recommend it. Q: I would love to know how to use technology best for a kid who still can't read at age 10 and is reluctant to try for the most part.  We are trying very hard, but I have to face the fact that he may never read fluently and be prepared for that.  Deborah: The fluency piece can be a lifelong struggle for many. Just, be sure that for the time being you have him working with an experienced teacher/tutor using a research based reading intervention that matches his specific needs. Tell him often how proud you are of the hard work and extra effort you see him putting in each day and give him opportunities to try different technologies to see if he finds them helpful. Kathy: I’m not sure if you are saying that your son is reluctant to try reading or try the technology. In either case, the challenge is finding a way to increase his interest, motivation and willingness to try. In terms of the technology, I would suggest finding any book that would be of interest to him, downloading it in an audio format, and listening to it with him. If comprehension is not an issue, he might find he really likes listening to books. Then you can work together with him to discover the format and device he likes best. Does he like listening to the human voice? If so, you might want to get him a membership to Learning Ally. Does he like reading along as the words are highlighted? Is listening to a computer generated voice okay? Then you might want to try Bookshare. Does he like listening on his computer or a portable device? The key is finding what works for him and what will peak his interest. No one approach is right for everyone; let him be a part of the process as you search for workable solutions. Liz: My daughter started using the iPad last fall at the age of 11 (and in 5th grade) in order to help her with homework and reading. Her reading level and fluency were very low and she could do very little independently. She started using Bookshare’s app (Read2Go) and Learning Ally’s app to allow her to read books (with accompanying text on the iPad that is highlighted while being read) that were much more on her intellectual and maturity level. Finally she was reading a book that didn’t sound so baby-ish! The accompanying text was very important to her because she is very poor at tracking and could not follow an audio book without it. This new way of reading also exposed her to higher level words that the lower level books just don’t use. Thus, the iPad books increased her “print vocabulary” which was very much lacking with the easier books. The other apps on the iPad, like iPages and Neu-Annotate, allowed her to do her homework more independently too because the apps would read the homework sheets to her so she knew how to complete them. The teachers would have to email her the homework sheets in Word files, which she could convert to pdf’s if necessary to complete. I still had to help her with some homework each night, but the iPad really made things easier for both of us and made her feel a lot prouder of her accomplishments. Do note, that as mentioned above, your child still needs to be working with an experienced teacher or tutor with a researched based intervention. Technology can really improve your child’s life, but it is not a substitution for proper intervention programs. Q: I have a few questions for Liz, only because she has a daughter with a similar situation as my son.  He is Dyslexic and has an Auditory Processing Disorder. I also believe he has dysgraphia.  What kind of doctor do I go to to have him tested for Dysgraphia? I struggle with my sons school system to get him help for his APD ....Although he was diagnosed with ADP and Dyslexia,  they always found it unnecessary to have him tested for assisted technology.  They always said he has everything he needs inside his special ed classroom during his services and because he goes to a private school, they feel that he does not need an assisted tech eval.  This year I have pulled him out of Private School to put him into public so he can receive more services.  My question is.....who tests for dysgraphia? Liz:   An Occupational Therapist can test for dysgraphia, but an OT in a public school may not call it “dysgraphia”. OT’s are also the ones who work with kids to help them with their dysgraphia, which is of course much more than having sloppy handwriting. To receive OT services in a public school, the student needs to be significant behind in many areas to qualify for services. My daughter was so severe, there wasn’t any question, but that’s not the case for most. Do note that it can take a long while for the student to improve their letter formation, line adherence, writing speed, copying speed, visual processing and spacial relationships, among other things. My daughter has had OT for 5 years and while her handwriting looks much better, she still writes very slowly and still struggles with the other areas. Assistive technology can really help as the child gets older and the writing demands increase faster than his or her progress. If you can’t get technology at school, start with it at home with homework and then maybe you can show how it’s working and your school will give it a try, although public schools aren’t always willing to try new things. Q: I recently met with our school superintendent to discuss my concerns about the school's lack of knowledge of and services for dyslexia. He was completely uninterested, told me dyslexia was rare, and refused to believe research I presented from Yale and Sally Shaywitz. I was just floored. Our district has very high test scores and because of this he says there is no way that 1 in 5 children have dyslexia. Should I even try to pursue this problem or just let it go? Liz: It could be very challenging and frustrating to try to change one individual’s mindset or perspective. However, you might find it very rewarding to connect with other parents to start a local awareness campaign either within the district or community. Consider sparking interest with a movie screening or host a family-educator forum. Find others in your school or town who also want to have an impact and start brainstorming! Kathy: It is unfortunate that your superintendent is uninterested in learning about a condition that impacts many of his students. Connecting with others who share your concerns can be really helpful – there is power in numbers. Whether or not dyslexia is rare, if it is something that impacts your child, you have a right to request an evaluation. If the evaluation reveals a disability, the school has an obligation to address your child’s unique learning needs.

Stay in Touch: Subscribe To Our Newsletter.

View our previous newsletters.

hidden