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The Gift and Curse of a Dyslexic Kid

They are called twice exceptional kids – those that are graced with high intelligence and a learning disability. I’m sure you know many. Even if you don’t know who they are. Well, add one to the list: Henry Ward. Gifted dyslexic. Identified at age 9.

I have been loath to post about our experiences in the last year because of sensitivity for my child, loyalty to my school, a sense of failure in myself. But, I know I can’t be the only one that’s dealing with these issues. And, even more important are those students that don’t have an advocate. We need to know that the system is not working …. And if it’s not working for my kid, what about the one downtown with two parents working multiple jobs? What about the kid whose parents feel that the school/teacher/establishment must know best and their gut feeling must be wrong?

This is a long story and I have been aching to tell it. Bear with me.

In September of 2014 I noticed something was off with Henry’s spelling and writing. He had never had problems on spelling tests, but in writing thank you notes he would jot down four or five words – three of which were misspelled. Including the word “from” (now you know why you didn’t get one by the way!)

At the same time, while we had found some books that he was “reading” he was not able to score points in the comprehension-based online program Accelerated Reading. ZERO points in the first quarter of 3rd grade. I was talking with his teacher – she was not worried, said he was fine. But how could he not understand any of the books he was reading? More importantly, retain?

I asked for him to be tested, and at first the school resisted. He was reading at grade level, and therefore, not sticking out. We had a first test at the school, which was followed by a lengthy wait for a test from the district which then was followed another month later by an assessment. Two pages – Henry had mild dyslexia.

Dyslexia is pretty interesting. First of all, it is a wiring process in the brain – or more specifically a lack of wiring – in the area that turns written words into sounds. You see the word “pilot” and don’t see that there are two basic sounds … and even more astounding, it can strike people in all sections of the world regardless or because of differences in language. You see, Henry is in Chinese Immersion- half a day in Chinese. He does not have trouble with the Chinese characters – amazingly, thankfully. It is his favorite and what a joy to have success for him. But there are people who are dyslexic in Chinese and not English – or in math and not language (dysgraphia).

Dyslexia is also usually accompanied by extra wiring in other parts of your brain – spatial awareness, big picture thinking. Alexander Graham Bell, Thomas Edison, Albert Einstein, Richard Branson, Henry Ford, Da Vinci, Patton, Timberlake. Some of the biggies. It can be a gift in many ways.

The district actually recognized the dyslexia in a differential for Henry – how well he did when he heard something vs when he read it. But, due to a lack of resources, and disconnect on the “mild” part of the diagnosis, he did not receive intervention but once a week for 1 hour. (Meaning an attempt to rebuild those sound to sight connections). Meanwhile, he was growing so disenchanted with school that he started having anxiety attacks. Crying every night and every morning. He was a wreck. I was a wreck.

We asked for accommodations, and they were put in place very quickly at a school and district level – the standardized test benchmarks were read to him and he scored a full 20% better from fall to spring. But, we experienced push back in the classroom – whether a lack of training or understanding or flexibility – tests were not read as I had requested. I offered to record tests, I asked for spelling to not be marked, I asked for alternative grading and assignments. On and on. It was a long semester.

We became so frustrated that we sought outside testing. There was something we were missing and we needed an expert to help us decipher what was going on. Henry was tested at the end of May. He got his report card a week later and got a C in math based off 6 paper and pencil tests that were not read to him. A B in Chinese after we were told his reading, comprehension, and fluency were on par with a native speaker.

Henry’s face fell when he saw his report card. My kid that was smart and capable and funny and so anxious about school that we had fought almost every day for months to keep him involved got a C on his report card at age 9. I was so upset for him. Grades don’t really matter until they do.

The outside testing came back two days later. Henry had a special Very Superior aptitude in applied mathematics. An IQ score higher than Davis or I. And, needed daily dyslexia intervention to retrain his brain.

This is the letter I wrote to the school “Henry needs to be in an academic environment that is stimulating, challenging, and supportive of his strengths and weaknesses. He needs to know that his teacher cares about him, he needs to have a sense of control (over assignments – like which books to read), and tangible recognition of how hard he is working such as receiving grades on content and thinking rather than on form and written assessments. More than for others, a dyslexic child’s route to learning is through meaning – focusing on topics and real live examples and experiences. (This is taken directly from Dr. Sally Shaywitz’ book, Overcoming Dyslexia – the #1 recommended book on dyslexia). We want to avoid him getting another C based on assessments that do not measure his true abilities – or allow his dyslexia to mask his capabilities.

This year we have amazing new teachers and they have a wonderful commitment to helping Henry learn. No spelling tests … instead, learning to type. Oral exams, project based work and computer assignments. We have fought to keep Henry in Chinese Immersion when so many said we should leave, but in doing so, have been unable to find common sccheduling with a school stretched on resources and time. Henry is the only kid in Chinese Immersion with dyslexia. And by 4th grade it’s hard to miss much – we were looking at him missing 40% of his Chinese time a day (or all of math or all of English – every day.

Instead, we are pulling him out of school every day at 2pm. I am driving him to private one on one tutoring. At our expense. I have friends watching the twins every afternoon since I can no longer be there at pickup. The school is not standing in our way.

I don’t write this as a “woe is me” tirade. Although there are days when I still struggle with what I should have done differently … what my year is going to look like this year instead of the year pictured …

I don’t write this as a “shame on them” tirade. Because even with all the faults in the system, we have been helped.

I write this as a “look what we went through” diary. A small clue to the battles going on behind closed doors, in families, in schools. Most importantly, as a wakeup call. 1 in 5 kids have dyslexia it is estimated. Do their parents have the time to invest in rounds of follow ups and months of meetings? Resources that allow them to make decisions based on what’s right for their kid instead of what they can afford? Or could they just fake it through the system long enough to be perceived as “fine”?

There is much wrong with our educational system these days. A focus on testing to the detriment of creativity and out of the box thinking and teaching. A criminal lack of resources for teacher pay, school aids, technology. To my mind, the things that Henry needs are what every kid needs – why should anyone have to ask for a caring, supportive teacher that differentiates … where learning is tied to concepts and not answers?

I think of all the Henrys out there – amazing, capable kids who would get so turned off from school by middle school that they would fail out with the current testing focus. Or disenchanted, leave school. Their gifts might be seen if they have the drive (George Washington, Rockefeller, and Spielberg) or if they are a mild case and have figured out a way to make it through. But how many have we missed, or will we miss in the process?

Henry still doesn’t know what he doesn’t know. I’m not sure when and how he will embrace his dyslexia. I hope that he will grow to know what he has as gifts and challenges. To be an advocate and to speak openly about his differences. Because, by the way, I have mild dyslexia, too.

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Mom, you should wear a bikini

My seven year old daughter is full of confidence and spunk and smarts and style. She asked for a bikini from the Easter Bunny. Delivered.

Totally and without reservation she put it on last weekend in preparation for a pool party, did a twirl in the mirror and set her face to one of approval. Then she turned to me and asked, “Mom, why don’t you wear a bikini?”

It was one of those seminal parenting moments I was totally and completely at a loss for words. “Because I worry what other people think?” “Because I have been called many things in my life and a covergirl is not one of them?” “Because my body has changed so much in the last four years that I sometimes don’t recognize my own reflection?” “Because the last time I wore a bikini was on my honeymoon with your Dad and I was a size I will never be again?”

I thought it would be a sign of strength and purpose – and frankly, there was a little bit of vanity involved – to be able to wear a bikini when I turn 40 (or even just before). Celebrating a milestone with style. But every time I look in the mirror, I see my imperfections. Every time.

I even had a few days where I did sit ups and crunches – thinking somehow that would put me over the edge and tighten this section of extra – abdominal muscles that were strained and pulled and cut and sewn. A belly that now thinks I’m postmenopausal and is storing fat like a rainy day is coming.

I know, logically, I should embrace my body – it’s been through a helluva lot. And it’s done me well. I have had three kids – two pregnancies – gained over 65 pounds with both … created happy healthy amazing kids including 16 pounds of twins … then the cancer. Scarred, implanted, tattooed … hormones amuk causing muffin tops and rounded corners and insomnia and anxiety. But, I’m still here. Why isn’t that enough?

As a woman raising a girl, I want to instill confidence and self-awareness and body image and a glorious, wonderful sense of assurance. I have struggled with it my whole life. What if I could save her from that in some small way? She is perfect now – fashion oblivious, sporty and hilarious and assertive and amazing. I want to keep this. Bottle it.

When she turned to me and asked me about the bikini, all of this went through my head. I thought of my struggles with healthy weight … losing weight when stressed to the point that I was melting away because I forgot to eat. Gaining weight while in chemo eating plates of french toast to abate the cravings. Up and down as a collegiate learning to eat and exercise and drink and not have the structure of square meals and sports.

Now I have the balance I always craved. I play tennis, I go to barre ocassionally, I dance with my kids. I drink light beer and champagne. I love chocolate. I’m not willing to give that all up, but I am also totally and completely and unabashedly self-conscious of the pile of “twin skin” and extra rolls that I have on my belly.

But when Emmy said that, I realized it’s not always about my feelings. Part of being a parent is sucking it up – lose sleep? Privacy? Adult conversation? And, selfishness.

So there was a bikini. And she wanted me to post it on Facebook. Here it is. But I do this for all the Moms out there raising girls. All the women who have gone through hell and back with cancer treatments and surgeries. All the women who realize that bodies can be perfectly imperfect and still celebrated. Who don’t have time for evened out tans or bikini waxes or body toning. Who live their lives and struggle through fears and try to love their bodies.

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This will be for you, for me, but mostly, for my girl. Because why shouldn’t we all wear a bikini?

And yes, this is as brave as I can be – lounging, sitting down. Girls weekend. I’m trying!

And, my girlie loved the picture.

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Telling the kids

Many of you have been with me throughout this crazy journey, but for those of you late to the party, I told my kids about cancer the day my husband got home from Dubai. Which means Two days after my diagnosis, two days after our world got rocked, 4 months after we had decided to go to Dubai and one day after I realized I wasn’t necessarily going to die but it was going to be a helluva year.

I was asked to blog about it by a survivor here in the Central Texas area – here is her FB page: https://www.facebook.com/VictoriousValBreastCancerCrusaders

She is posting it tonight and I promised some cross promotion so here it is. Check it out. More later.

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