Raising and educating kids with dyslexia

TestsIn order to receive academic support and accommodations in college for a learning disability, such as dyslexia, a student has to formally declare their disability to the academic support office of the college by providing appropriate documentation about that disability. Usually this is a neuropsychological evaluation and should be completed within three years or less of the college application.

We began this process in the summer prior to my daughter’s last year of high school. We were careful to choose an evaluator to complete the neuropsychological testing who specialized in the transition from school to college. This included the adult version of the Wechsler intelligence test (Wechsler Adult Intelligence Scale–Fourth Edition), as this is what the colleges want to see, as well as the Wechsler Individual Achievement Test–Third Edition (WIAT), Gray Oral Reading Tests (GORT), Test of Word Reading Efficiency (TOWRE), Wide Range Assessment of Memory and Learning (WRAML), and others. The report we received following the testing was clear and concise, and included recommendations appropriate for college. Unfortunately, in the past, not all evaluators have provided easy-to-read reports, nor have their recommendations been appropriate for the child or circumstances.

Along with the report being used as formal documentation of my daughter’s disability, we also used it as a guide when asking the support office for accommodations. Looking through the report, there were a number of recommended accommodations for college: additional time (i.e., time and a half) on tests and exams, use of note takers, a computer/laptop, audio books, and technology such as Dragon Naturally Speaking or Co-writer, and a reduced course load.

According to her college web site, the most common accommodations requested are: extended time for in-class examinations (up to double time); extended deadlines for major/term projects up to 24 hours; quiet, distraction free environment to take examinations; rest breaks, as needed, during examinations; permission to leave the studio, without penalty for brief periods of time; frequent meetings with the instructor to discuss course content or pending assignments; access to student note takers; access to e-text and books in alternative formats provided by the resource department; undergraduate course load adjustment.

My daughter requests a few of these and has been provided with note taking services; class notes, textbooks and other materials provided in alternative formats using e-text; extended time for class assignments with lengthy reading and writing comprehension; permission to record lectures; required reading available days in advance; professor assistance with clarification of material or assignments. However, even a few weeks into the semester, some of these accommodations are not panning out as easily as we thought.

In a school setting it is okay for the parents, a specialist such as the external psychologist, or an advocate to sit in a meeting an ensure the appropriate accommodations are written into a child’s educational plan. In college, apart from initially going through the report with my daughter and advising her on the accommodations to request, as an adult she is on her own, advocating for her own accommodations. So, when she was provided an accommodation for using a laptop for exams, there was no one else to suggest that this accommodation should include being able to use her laptop for taking notes in lectures, as well! Nor was she prepared for one lecturer telling her it was against school rules to record lectures. Or, when she arranged, through the college library, for one textbook to be provided in e-format, it did not include audio. So, although accommodations in principle are a good idea, the reality of accommodations that are beneficial is proving much more difficult.

The transition to college

laptopI was wide wake the other morning at 3:30am, unable to get back to sleep. The culprit partly responsible for my insomnia was jetlag (I have just returned from the UK so 3:30am EST was really 8:30am!), but I was also tossing and turning because my daughter has started college this week. She has transitioned from a high school that specializes in students with language-based learning disabilities and boasts of one-to-one tutorials everyday, an average academic class size of 4-8 students, and classes designed to provide individualized, remedial instruction. Now she is in a different academic world. At 18, and as an adult, she must self-identify her disability if she wants to receive any accommodations for it. Her first class is a fast-paced course on the history of Western Art consisting of lectures with 399 other students. No wonder I couldn’t get back to sleep!

With some encouragement and her own determination, my daughter sought out the Academic Resource department between the end of her orientation and the beginning of her academic classes. By providing the appropriate documentation, she was determined to be eligible for accommodations under Federal ADAAA guidelines (more about this in another blog post), but the letter outlining her accommodations that needs to be given to her lecturers will not be ready for a few days. In the meantime, she has had her first class! Having been taught in high school to take notes on her laptop (she finds this particularly beneficial because it helps with her spelling) she came armed with this tool to the auditorium packed with students. I received a text message as she waited for the lecture to begin: “do you think I’m aloud to us my laptop to take notes everyone here has a notepad.” That surprised me. Having completed a masters degrees a few years ago, non-laptop note-takers were in the minority. But, as the lecturer explained in his opening comments, there would be no laptop use unless it was an approved accommodation. So, the laptop was put away. Not only does my daughter need that official accommodation letter to get her accommodations started, but now she needs to get it modified to allows use of a laptop for note-taking. Tomorrow, will require another visit to the Academic Resource department!

Celebrating

I’ve noticed, on this journey of dyslexia with my children, that all too often the emphasis has been on the disability, and remediating that disability. Remediation is a good thing, but the disability and remediation are not everything. We should not miss the amazing abilities that come with dyslexia.

So, in this blog post I want to highlight  and share one of my daughter’s abilities. You won’t mind a proud mother showing off a bit, will you?

pab_portraitMy daughter recently won a National Gold Medal in the Scholastic Art and Writing Awards. This award was for a self-portrait in charcoal, that you can see above. First of all, this self-portrait received a Gold Key at the regional level. Approximately 7 – 10% of all regional submissions to the Scholastic Art and Writing Awards are recognized with Gold Key Awards.  This award then makes the submission eligible for  national-level recognition. This year, 2012-2013,  230,000 entries were submitted to the national competition. Only 1% of the original 230,000 entries received national recognition!

We have had so many struggles over the years dealing with dyslexia, but in this last year of high school it has been a time to celebrate the strengths. And celebrate we did with a trip to the awards ceremony in Carnegie Hall in New York City! Actually, the highlight of the ceremony for my daughter was the surprise appearance of Usher!

Speech/language screening

preschool reportThe report that I mentioned in my last blog post didn’t take that long to find! Over the years I have had to supply copies of reports related to my children’s testing to neuropsychologists, educators and others and so I have been meticulous about keeping and filing all paperwork. And, as we moved house last summer, I had already eliminated a lot of junk.

At preschool, my daughter received occupational therapy screening and speech/language screening when she was three years old, and again at four years old. Interestingly, even at that young age her strengths and weaknesses were becoming apparent. Although, it is easy to say this with hindsight. For example, the occupational therapy screening highlighted that my daughter demonstrated particular strengths in construction skills. And these skills have continued to be an area of strength throughout her educational testing. In terms of weakness, the speech/language screening highlighted articulation difficulties with speech sound errors, leaving off word endings i.e. plurals, and omitting some words. Speech and language difficulties fit right in with a diagnosis of dyslexia and these difficulties became more apparent as my daughter got older.

On the report, the speech/language pathologist recommended monitoring and rescreening for speech and language development. I don’t think I followed up with that! In fact, I know I didn’t. I didn’t really take a lot of notice because I thought any speech errors would correct themselves. After all, my daughter was only three years old!

The journey begins

roundabout signI call this post The journey begins but at the beginning I don’t think our family even realized that we were on a journey–with dyslexia! Around nine years ago, when my daughter was in third grade in elementary school (in the USA), she was diagnosed with dyslexia. But, the journey began before that, back in preschool. From that time until third grade, we were going round in circles rather than moving in one direction.

The preschool my daughter attended offered educational testing. I must admit I didn’t really understand the significance of this testing. I was experiencing first child syndrome, if there is such a condition. In other words, I was green about everything. My husband and I had moved from Britain to the USA when our daughter was only six weeks old. Two years in, I was finding my feet in the USA and raising a child, and so we planned to have baby number two, except baby number two turned out to be baby number two and three. (To be correct I should call them baby A and baby B because these were the names given in hospital until we gave them proper names.) So, as I was juggling twins and a toddler and discovering which way was up, my decision on a preschool for my daughter was based on a friend’s recommendation. She was British, had moved to the USA with two children, and had already experienced placing her oldest child in a preschool in the UK and now in the USA. So, in my world she was an expert on everything to do with children and schools. As it turned out, the preschool was a good fit for my daughter. And, they offered educational testing! I thought this was an opportunity to see I had a wonderful bright child who was benefiting from an early start with education. As it turned out, I think the signs of dyslexia were already appearing. I will write about this in my next blog post. But first, I’m off to searching through boxes in the loft and finding that report…

I have made a very interesting discovery about one of my friends. She has been visiting from England and staying with our family here in New England. We had not seen each other for a length of time for many, many years – since we were teenagers. Then we used to spend most of our weekends together, staying at each other’s houses, and going away together to summer camp. Our mothers were good friends and we happened to become very good friends as well.  But, when I left home for university, and my friend left home to pursue a career, our ways parted. Since then, we’ve seen each other only on occasions, such as weddings and funerals. Having families and working kept us busy and leading separate lives, but it never took away our close friendship.

With this visit, we picked up from where we left off as teenagers, but my friend revealed a fact about herself that I didn’t know – she was dyslexic. The words I’m dyslexic popped out of her mouth within a few minutes of her arriving at our house. I was astounded. All those years – the weekends and the summers – spent together and I never knew this about her. I suppose, if we had gone to the same school then it might have been different. I knew her spelling wasn’t that great but she was and still is smart, creative and resourceful. Lots of people don’t spell very well and so it had never occurred to me that she could be dyslexic. But now that she had revealed this fact, we were able to share our experiences with dyslexic – me with two dyslexic children and she with her own experience and that of her daughter.  We had much in common in our teenage years and now we shared even more.

My friend’s daughter is at university in England, training to be a doctor. A fantastic achievement for someone with dyslexia! Her daughter is getting support in college for her dyslexia. This of course, with my daughter heading off to college in the Fall, is of great interest to me. When my friend left, to continue her travels in Peru before heading back to England, she agreed to send me more information about these supports once she arrived home. So, I am waiting in anticipation…

Art college and dyslexia

We’ve started on the journey of looking at colleges for my daughter with dyslexia.

This summer she is enrolled in a pre-college summer studios program at the Massachusetts College of Art and Design. This is providing her with an opportunity to experience art school and explore different art and design options through electives.

It did not occur to me, or my daughter, that this pre-college art program would involve a lot of reading and writing! My daughter’s comment to me tonight was that had she known this, she would have thought twice about enrolling. If I had known this, I would have enquired about how the program  accommodated her disability.

If my daughter is to pursue an undergraduate fine arts degree, then this will include liberal arts studies and consequently include s a considerable amount of reading and writing. Therefore, in our college search, we need to look at the resources offered by each college to help her succeed.

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!