Raising and educating kids with dyslexia

As my daughter begins her senior year at high school this fall, we are entering a new phase in her education. As a student with dyslexia, the road we’ve taken so far has been fairly well mapped out with specialists, educators and other parents explaining the landscape. We’re been able to find our way. But now, we are entering new territory. The territory of colleges is perhaps even more unfamiliar to our family as my husband and I both completed our secondary and higher education in British schools and universities, respectively. Our daughter is also the eldest of our three children and the first to enter the college scene. But, I understand that even for American parents the college landscape can be a journey of new discoveries as they travel it with their children.

So, I will be relating over the coming months our experience as we travel down this road of helping our daughter find a college. Please add comments if you have helpful advice to give to others and me. My next few blog posts will state where we have got to so far in this process. We’ve started on the journey. It will be a steep learning curve, or to use the analogy so far, the road rises steeply ahead of us but I am positive that we are going to enjoy the view from the top and we’ll be coasting from there.

Initially we look to various experts in the field of education and neuropsychology to understand whether our child or children have dyslexia and to direct us to the specialist instruction they need to succeed within the education system.

However, one thing I have discovered since those initial years of understanding and direction is that I have now become somewhat of an expert myself. I have learned a considerable amount about dyslexia and teaching methods for dyslexia. I have also come to understand my children’s learning styles, strengths and weaknesses, confidence or lack of confidence and many other things about the way they learn. And of course, because I live with them, I know them better than any adult who spends only an hour or so with them each school day. This knowledge coupled together means that I am pretty much an expert on my dyslexic children!

Consequently, for anyone with this kind of knowledge of a dyslexic child, it is important at the beginning of a new school year to be reminded that you have a considerable amount to offer to a new faculty of teachers, support teachers and guidance counselors who have very little knowledge and understanding of your dyslexic child, and who do not have the liberty of spending years to discover how best to teach your child. Offering them any of your expertise should only help with your dyslexic child’s success within the education system.

Summer fun

The end of the school year in the USA brings summer fun and… summer school. Summer school was something regularly recommended for my two dyslexic children by the public school system. It was written into their IEPs (Individualized Education Plan) and invitations to attend were sent as the school year ended. Summer school was proposed so they would retain skills learned during the school year that could be lost during the long ten-week summer vacation.

I had not encountered this phenomenon across the pond in England, probably because there the school year is nearly a month longer. However, now we have personal experience of summer school and that is what I relate here.

Some years my children have participated in public school summer programs and other years they have not. I cannot recall noticing any particular difference in their abilities between the years they did attend compared with the years they did not attend summer school.

They have also participated in summer programs that have offered intensive remediation. These have been beneficial, although they are also expensive. For instance, one summer my daughter completed 40 hours of the Lindamood-Bell (LiPs) program. Following this I noticed a definite improvement in her reading. More information on this experience can be found in my blog post Reading Methods for Dyslexia.

The drawback is that my dyslexic children do not have fond memories of their summer school experiences.  In the words of my daughter, “I wanted to be outside like regular kids, instead of being treated like an idiot.”

I find it unfortunate that students with dyslexia have to spend more time within an education system in which they find themselves at odds, and already struggle. Summer school seems to reinforce their inability to progress effectively within the regular education system. They spend extra time working on aspects of their education – reading, writing and sometimes math – in which they are never truly going to excel. Added to this self-esteem, probably already diminished in a child with dyslexia, runs the risk of being further diminished. After all, other students usually have the summer off. So, for the last few summers, summer school has not been on our calendar!

My son’s special education reading services have been discontinued. Since he was age seven in second grade (he is now thirteen and finishing eighth grade) he has been receiving specially designed reading instruction. This has taken the form of a number of different programs – Orton Gillingham, Wilson Reading System, Read Naturally, Project Read, and others. He has been taught such things as vowel teams, open syllables, closed syllables, and the floss and fizzle rule.

In the public school system, the reading instruction has been provided through an Individualized Education Plan (IEP). Before reading services could be removed from my son’s  IEP, testing had to be completed to ensure that he demonstrated proficiency in basic reading skills and reading comprehension. Services should not and cannot be removed from an IEP without these proper procedures being followed. This is good news for the child.

So, what does this discontinuation of services look like for our family? For my son, it is like being released. When he enters high school in the Fall, he is free to choose and have more subjects in his schedule. For myself, I have to appraise these changes. Sometimes making sense of the test results is a challenge. The testing may give scores and labels such as low average or high average that enable weaknesses and strengths to be spotted, but ideally, being able to compare the recent testing with previous testing gives a better idea of improvements made, or not. It seems that this is how the Gray Oral Reading Test (GORT) should be used. Comparing the results of this test with results from the same test taken some years previously, my son’s weakness in reading accuracy and fluency was still evident. Dyslexia never goes away. Perhaps the testing for visual stress later this summer may help shed light on this weakness. On the Woodcock Reading Mastery test my son’s word decoding and comprehension on this test came out in the average to high average range. My understanding of dyslexia is that often reading, or decoding words, can take considerable effort for someone with dyslexia, leaving little opportunity to comprehend the passage just read. I have found that when the hard work of decoding is removed, for instance when I have read the same passage to my dyslexic daughter that she has struggled to read, her comprehension of the passage has greatly increased. However, this does not seem to be the case for my son. He performed very well in both reading and comprehension.

While my son’s weaknesses in reading still exist, when I put these together with the positive feedback I have received from his teachers about performance and progress in school this year, and with the removal of reading support allowing an expansion of subject choices for his final four years of school, I think the discontinuation of reading services is okay. In any case, services can always be reinstated, if needed.

Scanning the brain

We now have some cool images of my son’s brain thanks to his participation in the study on reading and reading difficulties by the Gabrieli Lab at MIT in Cambridge, Massachusetts. Part of the study involves an fMRI (functional magnetic resonance imaging) of the brain to understand brain basis of reading and language. I cannot say that I even begin to understand this. Even the few questions I did ask about the research made me realize the complexity of the subject and the knowledge of neuroscience of the technicians conducting the testing. Yet, it felt good to be participating in some research that will lead to a better understanding of dyslexia.

The MIT campus in Cambridge is always fascinating to visit. From our designated parking spot, we made our way to the McGovern Institute for Brain Research that took us alongside a railroad track. People sat in the building above us as we walked through an underpass noisy with the sound of air being sucked through large vents and the humming of air-conditioners.

Even on a Sunday afternoon it seemed that the MRI scanner was in constant use as one appointment ended and our appointment began.

For nearly two hours, my son laid head first in the scanner. The lower half of his body protruded out of the scanner. The only thing I could clearly see was the bottom of his sock-clad feet. As a mother, I was not impressed with the state of the bottom of his socks, but I was impressed by his cooperation and perseverance to remain still during the specific tasks he was given to complete and to enable good quality images of his brain to be obtained. At $30 an hour, he had some incentive.

We were informed that my son’s brain is one of the last five brains to be scanned in this study. The study, with 500 children and adults taking part, which began three years ago, is nearing its end. This is good news for us as we can expect to see a report from the study in six months time, rather than waiting over three years like those who participated earlier in the study. The only concern, my son pointed out, was that his twin brother would not be taking part in the fMRI part of the study and would therefore miss out on the remuneration.

It seems we equate being able to read with intelligence. Maryanne Wolf raised this notion in the recent HBO documentary Journey Into Dyslexia. This does not make sense. What I could understand more is if we equated being able to read with being educated. But, even that’s not true.

HBO’s synopsis of Journey into Dyslexia quotes a recent poll that indicates eighty percent of Americans equate dyslexia with mental retardation. Mental retardation is a very loaded term. On one hand, the term implies a lack of intellectual ability to learn or the lack of skills for daily living. On the other hand, the term is used to make fun of other people. The term should not be used, especially to label a person. Perhaps it was used in this instance deliberately, because it is charged with meaning and it does get a reaction.

Instead, adults and children need to be fairly and honestly educated about dyslexia. On the surface, someone who is dyslexic may look like they do not have intellectual ability. Cognitive testing reveals that, with dyslexia, the ability to read has nothing to do with intelligence. I can vouch for this because testing, using the Wechsler Intelligence Scale for Children (WISC), has shown that my dyslexic children are intelligent and have well above average IQs. So, let’s get it out there – dyslexic people are intelligent. Brain research has found, and the HBO documentary Journey Into Dyslexic testified to this, that reading in people with dyslexia activates areas of the brain that are different from the area of the brain usually activated by reading in people without dyslexia.

We should equate knowledge, learning more and not making assumptions about dyslexia with intelligence and being educated.

Journey into Dyslexia

The dyslexic student doesn’t fit into the education system. It’s like trying to climb into a box that is too small.

As I watched HBO’s Journey into Dyslexia last night, the documentary emphasized the struggle for the dyslexic person in the education system. The education system was described as having chosen a narrow band of learning in life into which the dyslexic student is expected to enter, and the main way through which he or she can achieve success, or failure. In the documentary, each dyslexic person interviewed had difficulty fitting into the education system. Most of them had emotional scars from this experience. It was heart breaking to hear their stories.

The documentary brought to mind my frustration, as a parent of two dyslexic children, with the education system. Often I struggle with knowing how best my children can survive their time within education and emerge from it as successful and unscarred. My underlying assumption, sadly, is that they are never going to be truly successful. I try to help make the system work for them, but success within it relies too heavily on being able to read and write.

I’ve found that most dyslexic students are offered slower-paced classes, because they don’t read and write with the same fluidity as other students. Slower-paced classes mean that less content is covered. Dyslexic students do not have a problem with understanding  content. The problem is being able to access the content through reading and explain their understanding through writing. Slower-paced classes are not an answer to the problem. Slower-paced classes are an insult to their intelligence.

Dyslexic students are offered reduced curriculum. They are provided with textbooks that are easier to read, but that are also below grade level. Consequently, the content is less challenging. This also is an insult to their intelligence.

Dyslexic students are offered reading, and speech and language services in place of other classes. Often in middle and high school they have to miss out on particular subjects or electives in order to have these services. The classes from which they are excluded are likely to be subjects in which they could excel, given the right teaching. The lack of variety of subjects is an insult to their intelligence. Instead, they have to spend more time on reading and writing in which they are never going to be able to succeed.

All of this is frustrating and it is not an education.

So, what can the dyslexic student do to overcome this? They have to be encouraged to struggle through the current education system or they succeed by going around the education system, and excelling outside of the traditional academic environment.

Having said all this, some credit must be given. Understanding of dyslexia within the education system has improved. At one point, and this was apparent in the documentary but I also know this from experience, dyslexic students were not diagnosed, and instead were told to give up at school, to leave, or seated at the back of the class. There was little hope for them within the education system. Today, the understanding is better. Dyslexia is diagnosed within the education system and help is given with reading and writing. However, there is still an awful long way to go in changing the education system to allow people with dyslexia to be successful. My feeling is that those with dyslexia are the ones who are able to identify areas of change needed within the education system because they are the ones who can think outside it.