A Parent's Point of View — Q & A

A Parent's Point of View - Q&A

 

When did you first become aware that your daughter was struggling in school?

I was able to tell very early, in first year preschool, that Emily was having some difficulty with learning. She had trouble with the letters of the alphabet, couldn’t remember any of her classmates' or teachers' names, and couldn’t recite nursery rhymes. We also knew by then that she was having some difficulty with being able to name specific objects. It was also about this age that we noticed she was having difficulty learning to pedal and steer her bike as well as swim.

Tell us about the process of getting a diagnosis of dyslexia.

Knowing that something wasn’t quite right, I began looking for help in determining what the problem was. I had been in constant contact with her teachers and they provided no assistance in understanding the problem. By the end of second year preschool Emily only knew the letter “E”. By the end of Kindergarten, she knew most of the letters of the alphabet, but could not read at all and she could not remember sight words. She still struggled in first grade with sight words and reading. The school put her in their Reading Recovery program, but she made very little progress. We had her repeat first grade (bad idea!). By the middle of second grade, I was tired of looking to the school for answers – it was obvious they had none. I came across an article about learning disabilities and checked out some of the websites it recommended. After looking at the websites, I had a pretty good inkling that my daughter was dyslexic.

After receiving no help from the school, I made an appointment for Emily to see a neuro-psychologist. She spent an entire day undergoing evaluation. While the doctor said she definitely had trouble reading and recommended an IEP at school, she was not able to formally diagnose Emily as dyslexic. She did, however, recommend that we take her to an audiologist. From that visit, we found that Emily also had a mild auditory processing disorder. The audiologist recommended that we take her to a speech language pathologist. The first SLP we took her to found issues with word finding, decoding, and syllabication and began working with her, but did not make any progress. By now, I had enough information to take back to the school and request that they formally evaluate her, as is required by law. It had become very obvious to me that there were no medical practitioners who were qualified to diagnose dyslexia in our area.

The school psychologist did what we asked of them and tested Emily. She scored in the low average to average range on every test they had given to her. They told us in our follow-up meeting that there was nothing wrong and that she did not qualify for any special education services. We then asked, if nothing was wrong, why Emily could not read. The room was very silent.

There were a couple of reasons why I was so adamant about getting this diagnosis even though the school didn’t see the point. First, Emily needed to understand what the issue was so that she could communicate the difficulties she was having as well as learn to advocate for herself. Also, I felt we couldn’t adequately address the issue if we didn’t fully understand the problem.

By the end of second grade, we had discovered another literacy specialist who had expertise in both oral and written language. I explained everything that Emily had been through and provided them with copies of all of her other testing. We took Emily up for two different testing sessions and they were able to pinpoint exactly what her problems were and which areas she was deficient in. It was such a relief to specifically understand the problems she was facing! They found that she was missing a fundamental skill of understanding vowel sounds, long versus short and the specific sound each vowel makes. We finally had a starting point! I am confident that we would not have found the appropriate help for Emily if it had not been for our literacy clinician!

How was this diagnosis communicated to you? Was that an effective manner for you? What else would have been helpful?

I understood a lot about dyslexia and special education by the time we received her formal dyslexia diagnosis from her clinician. I had done an immense amount of research on special education law, learning disabilities, auditory processing and dyslexia. I bought books, borrowed them from libraries, used the internet, joined the International Dyslexia Association, and networked.

The official diagnosis came in a formal report from the clinician; however, the SLP sat down with me and explained the report and what specific issues they discovered in Emily. I was educated enough by this time to be able to have a conversation and ask questions about the next steps we should take to help Emily. I always was comfortable asking questions and sharing information with Emily’s SLP.

Talk about how you were impacted by this diagnosis?

I have to say that I was quite relieved. We had what I had been after all along and only now could we move forward to identify the kind of help she really needed. It was obvious that the staff at Emily’s school was not qualified to offer her any real kind of assistance to help her overcome this learning disability. They could help her through it by reading to her, giving her more time, adjusting her assignments, but they did not know how to teach her to read.

Is there a family history of dyslexia?

I have not been able to trace back any family history of dyslexia. Emily’s younger cousin also has dyslexia (quite different from Emily’s), but no one else has come forth with information that would confirm a family history.

How did you educate yourself about dyslexia?

I did an immense amount of research. I have a small library on both dyslexia and special education. I needed to learn about special education so I knew how to navigate the school system, and I needed to learn about dyslexia, not only to better understand my daughter, but to educate the teaching staff at her school. In addition to books, I researched online, talked with college professors, joined the International Dyslexia Association, attended seminars and talked with her SLP each time Emily came in for a session.

Was there any intervention that you sought out?

After Emily was evaluated, we enrolled her in the intensive six week individualized summer program. She went to therapy twice per week during that timeframe. Once summer was over, she continued to attend therapy on an individual basis. Her therapy was developed specifically for her needs and was adjusted based on her progress. Goals were set and her progress continually monitored to determine the next set of goals. Therapy started with a foundation of literacy skills and as goals were met, additional challenges were introduced.

In addition to the onsite therapy sessions, I worked very diligently with Emily at home reinforcing the skills she learned in therapy. We worked on these “assignments” five times per week, every week.

Emily’s therapy was very explicit as she learned the rules that apply for reading, spelling, writing, and syllabication. Testing results had already shown where Emily was deficient. Over the period of time Emily attended therapy, her reading and writing improved drastically.

Her literacy specialist worked with Emily on the following deficiencies: Short and long vowel sounds, specific consonant blends, single syllable words, sight words, reading speed, reading accuracy, syllabication (rules to sound out words), spelling rules, writing rules, and vocabulary. These items, and others, were worked on intensively. Emily had to demonstrate a sound understanding of each area before the next was introduced.

Emily enjoyed her therapy sessions, which went a long way to get Emily’s buy-in to therapy. This made it much easier to get Emily to do her work, be prepared for therapy and work diligently during her sessions.

Were you able to get help for your daughter in school?

We really struggled with this, especially early on. I was looking to the teachers to offer assistance and they didn’t. They were mostly uneducated about dyslexia. The school principal was not interested in helping Emily. She was, after all, the model student – good grades, good behavior. Only after we requested a meeting, did all the appropriate staff come together. They still were not helpful. They insisted that she did not qualify for an IEP.

I contacted a special education attorney and sent her Emily’s file. The only thing I wanted to know at this point was whether Emily had a legal right to an IEP. The attorney confirmed my belief and we hired her to help ensure that Emily received the help she needed. In the meantime, Emily had started therapy sessions with her literacy specialist. She did eventually get an IEP at school; however, it was not what we wanted for her. They used an eclectic or patchwork approach instead of following a systematic one. After her first year on an IEP, she was re-evaluated. I was able to take the new test results and compare them to the results from the year previous. What I found was astounding. She had regressed compared to her peers in every area! I then asked for a meeting with our school district superintendent. I made an agenda for the meeting so that I made sure to cover every element we needed to discuss. I also brought color graphs showing the regression over the past year. It would have been very difficult to not see the school’s failure in teaching her to read with the graphic representation of the testing results.

Her fourth grade year was much, much different. We brought Emily’s literacy specialist to the school for her IEP meeting and conference called her in when additional meetings were held. Her new IEP was set up to supplement the intervention she was getting privately. This new approached worked very well and we continued this for two years, through fifth grade.

Who did you talk with about your daughter’s dyslexia?

I talked with anyone who would listen. I had no one who knew anything about dyslexia, so it was mostly me talking about what was going on and the difficulties I had with the whole experience. It was extremely helpful to have met our literacy specialist. I now had someone who could take what I was telling her and give me feedback as well as incorporate that information into Emily’s therapy.

Did you find any other parents that you could talk to about your daughter's dyslexia?

I have found that there are a lot of parents who know there is something amiss with their kids, but don’t know what to do about it. Unfortunately, I have also found that the majority of parents don’t take the initiative to learn about those issues or take action on behalf of their kids.

How did you see your role as a parent in your daughter's education?

My job, as a parent, is to ensure Emily has the ability to choose her future. She has so much passion for the things she loves that I want her to be able to willingly explore those options as her future unfolds. College is certainly on my mind and I think that now she has the ability to be successful in whatever career she chooses.

How has your daughter's dyslexia presented over time? Have her difficulties changed at all?

Emily had a number of challenges when she was little. People laughed at her when she said things because she couldn’t come up with the right name for an object. For example, she was staying the night at a friend’s house when she said “let’s go see your squirrel”. They had a guinea pig. Everyone in the house thought it was very funny. I cringed a little inside because I could imagine how that made her feel to have everyone laugh at her.

Reading was frustrating and slow. The Reading Recovery program the school used taught Emily how to guess at words and that made it even more difficult. She was now guessing at words based on the meaning of the sentence without regard for the letters that were even in the words she was guessing at.

She always needed help with homework – every piece of it. While she is very good at math she always needed the directions read to her.

Then something happened that stunned me. She became interested in reading! She wanted to read Twilight by Stephanie Meyers and purchased the book with her own money. This was in the fourth grade. I offered to read the book to her, but she said she wanted to read it herself. After a week, she came to me with her book and asked me to read it to her. She had not gotten past the first page. So I read the book out loud to her. She was so intrigued that we bought the remaining three books and I read them to her also. Once we were done, she wanted me to start over. I told her that I would read them all to her again, but that she had to read to me at least one page per chapter. She did so well with the first page that I had her keep reading and she actually read the entire book to me! I didn’t look over her shoulder and I did not correct her when she was wrong. When she stumbled over a word, I just told her what it was. I wanted her engaged in the story. At first, I was telling her about 10 words per page, but by the end of the book I was only telling her one word or so per page. It took her most of the summer, but she was able to lay claim that she had finally read her very first chapter book!

Emily is now in the sixth grade. She no longer needs consistent help with homework, organizes her time to ensure all of her work gets completed, is no longer on an IEP at school, does not need modified assignments and reads all the time. She is still a slow reader, but she has recognized that the more she reads, the faster she gets.

How does your daughter feel about her learning and school?

Emily loves school. She is confident, gets good grades and works very hard at what she does. She has learned to communicate better with her teachers about what she needs and when she needs it. She has actually been talking recently about becoming a teacher.

How did you get your daughter to read for pleasure?

We exposed her to a lot of different things. We took her to the bookstore and the library. I would read to her when asked. She listened to audiobooks. The most exciting thing, though, was when she was playing around with my Nook Color. I had a book on it that I thought she might like so I showed her how to use it. She is now saving money to buy herself a Nook and uses her computer to read the books she buys from Barnes and Noble. She reads for pleasure every single day! She has been buying so many books that she is having difficulty saving enough to buy her own Nook. Guess mom will have to come to the rescue!

Is there any advice you would give parents of kids with dyslexia?

Get educated! Don’t give up trying to help your child. If you don’t fight for them who will? It takes time and effort to learn about your child’s disability, but that effort will pay off in your child’s future. I want my daughter to be able to do anything she wants to – now I am confident she can.

Is there any advice that you would give professionals working with students with dyslexia?

Offer plenty of support for parents. I am sure many of them feel like I did at first – frustrated, mad at myself for thinking I didn’t read enough to her, etc. Offer resources for parents to get better educated, perhaps create a library of materials clients could borrow from or create a blog on your website for parents to learn from each other.