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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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Prognosis Good, Surgery Curative

Cameron, the 10 year old lab mix dog that saw me through trials and tribulations of cancer and treatment is apparently cancer free as well after open chest surgery last week.

We went in on Tuesday to meet with a surgeon – to talk about options. He was the best in town, we were told – referred by our vet and other doggie parents – and Davis and I took off from work to attend.

We stood there with an anxious dog while Dr. Kerpsack reread some of the materials we had and then laid it out – Cameron either had a cyst (benign) or thymoma (cancer) based on all the imaging and all the studies and all his experience. If it was cancer, surgery was necessary and soon – if it was a cyst, it could get big enough to cause him trouble later but it wasn’t urgent. But, if we wait, guess what? It could get too big to operate at all. And, oh by the way, because our vet had conveyed a sense of urgency, he had scheduled time to take care of it today. What did we think?

I am still reeling with the intensity of these last few weeks – the recurrence of cancer in our lives, the pain of not knowing what to do, and then the difficult decision to put our helpless sweet animal through what would end up being open chest surgery. Now, remarkably, he is up walking around – we have to keep him from jumping on the bed – he doesn’t know his own limits it seems, only I know mine more acutely now than ever.

I think I am going through some version of PTSD – not that it was combat in the traditional sense, but certainly trauma. And for the entirety of the journey I feel I was able to keep moving – to not allow myself the moments of doom or anxiety that could have enveloped me.

The irony is I feel it now.

I feel such a sense of commitment to Cameron’s recovery that each decision – should he be allowed outside? Should he be forced to sleep in the guest room? When do I give him his pain meds? How do we separate him from the puppy energy? Each step has taken on a gravitas that is seeping into my bones.

All those feelings of loss and pain and loneliness are here again – retrograde.

The irony is that he’s doing great. The surgeon claimed that the prognosis was good and they removed the mass which it turned out was thymoma. It was 6cm by 10 cm. They also removed a giant lipoma (fat mass) that had developed under his chin – 30cm by 30cm. Now he is the dog formerly known as frog dog. And I can tell he’s loving it.

I just feel a little buffeted this time around. I have no additional bandwidth to process all the newness. The new normal again and again and again. It’s one thing to get a strategy for sleep with a new puppy. Quite another to layer on the adult dog recovering who wants to go upstairs but can’t with doctor’s orders and how do you keep them separate and happy with one adult available during the day over a three day weekend?

My husband has borne the brunt of the sleep disruption because I have no capability – no reservoir of strength any more for sleep disruption. I am so very thankful. Where would I be if I were truly sleep deprived instead of just sleep altered?

I also have no capability for additional responsibilities. I am ridiculously thankful we have the puppy – who else could we cuddle and coddle while going through this emotional rollercoaster? And she’s amazing and cute and funny and potty trained.

I went back and reread the notes and cards that you all sent throughout my most focused battle – with each day it gets better – you’ll look back on this and realize that it really did suck – and that every victory is worth noting.

It was a good reminder of the path I have taken – and now that I can help my dog take it too as best I can.

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Anxiety is back – that old familiar feeling

Blogging is cathartic for me. So, I hope I get some of that good juju by taking a break today to put it all on the line. This one will be all over the place – because that’s where I am right now. But ohwell, another day in the life.

I have a ball of anxiety in my stomach curled up consuming me right now. I have always tended toward anxious – that is the type A personality after all, but occasionally, it comes back. It is like a ball of warmth that sits in my belly – reminding me every minute that I am not in control. Hi there ball I say – and it rustles and coils.

It seems to coincide with lack of sleep. And, here we have again, lack of sleep. (puppy – more on that in a minute)

It seems to coincide with multiple workstreams of powerlessness – a lack of a plan or control on a few different fronts.

So, here I am with multiple issues (none life threatening, none that are massive), but without a means to corrale my feelings, emotions, or plan a next step, I am paralyzed with my anxiety ball until I either get enough sleep, take enough meds, or come up with enough plans to make it all better.

After the initial euphoria that the dog’s cancer was operable, there are qualifications. The surgeons are suggesting multiple surgeries to remove it, multiple procedures that would be violently invasive – requiring drains and stitches and recuperation and recovery. He is fine right now, laying next to me on the bed. He even managed to play a bit with the puppy at her insistence this weekend. How can we put him through such pain and uncertainty when he has no visible distress right now? How much discomfort should we force on him just to have him with us another six months? I fight back tears even as I write this – how do you decide someone else’s well being? When they have no say … and yes, he’s a dog, but the echoes to my past two years (how can I expect him at 10 1/2 to recover what I am still reeling from in terms of invasive and corrective surgery? how can I not provide him the same support and therapy that he provided to me?)

I am having trouble with my hip – a consistent muscle ache that leaves me unable to sit or stand certain days. Is it the cancer back? I have appointments with physical therapists and masseuses and have started doing yoga and exercising – but what if that’s not enough?

And, the puppy. She is wonderful – sweet and loving and curious and soft and hilarious. But she is up in the night – how do we balance what we know is right (giving her access to the yard) with the needs of the family – SLEEP. I think we’re going to have to go against my humane judgement and crate her at night in the back room. Sanity and our health and happiness has to come first. I remind myself that some dogs live outside all the time. And then I start to second guess – was it too much to take on to make this addition now? Was I wrong?

Sleeplessness is a funny thing – it deprives you of your ability to compartmentalize, to fairly judge the severity of issues, and you forget how powerful an agent of destruction it can be.

OK, my anxiety ball is a little smaller now – I know it will grow the next time I think about end of life for Cameron and the decisions we must make, but I also must remember he is our dog and he is loved and happy right now.

I must remember that we are kind and loving den mates for our puppy – who is learning what she can do, and we are learning what we can do. As Davis mentioned to me last night – sometimes these last few months my desire is not met by my capability. I can not do the sleepless nights right now.

And, I think and hope and pray that this is just my muscles struggling to understand how to support and manage my new self, and not the cancer back. Enough is on the plate right now.

I heard a hilarious rant the other day from a lady who had lost her mother, her boyfriend, her apartment, and was diagnosed with cancer.

She said “Does God really give us only what we can handle? I picture him up there sometimes laughing – oh, she can take a little more. And the angels saying, God – what are you thinking?”

 

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The New Year’s Blog – 2014 and cancer-free … for everyone?

I had thought this would be the year our family escaped the cloud of cancer. Unfortunately we enter with a diagnosis hanging over our doggie – thymoma – cancer of the thymus gland. However, it is operable, and we hope he will have a successful surgery and long and happy recovery. THANK GOODNESS. The best news possible given the situation.

The parallels between our diagnosis are striking to me. We had virtually no symptoms, had a chance scan, and discovered a massive lump. It makes me very thankful for modern technology, but also concerned in general -what else are we missing if we don’t pay attention?

Although … one major difference … I was not bounced for my scheduled CT scan because there was a zebra with an abdominal wound in need. Yes, a zebra, in College Station.

After the rollercoaster of emotions the past few days, we enter 2014 with profound relief and gratitude – that our dog has the capability to live long and happy – that we have the time and resources to tackle his cancer and my recovery. That we are surrounded by a loving and caring community who loves my “Nicky Minaj pink streaks” and our giant frog dog.

These are the times when I remember why 2012, and 2013 both didn’t suck.

  • I grew to a first name basis with my insurance company and reached my out of pocket maximum. Two years running. Cool thing is – nice tax break. Now that I’m working again, I can be so thankful for our cash flow and the fact that we had amazing insurance through IBM. $300K paid in total for me the last two years. Now that we are paying out of pocket for the dog, I realize the true magnitude of that gift.
  • I realized how amazing my husband is – that support I had planned to give him was returned a hundredfold as he took the reins of family control, family CEO, shrink, Mom and Dad. He was – and is – amazing.
  • I got to see what my body is capable of in terms of healing – and it’s pretty freaking awesome.
  • I’m no longer vain about my appearance. Not that I really ever was, and yes, I do wear makeup and earrings. But there are some bits here and there that aren’t what they used to be and hey, that’s OK. I mean, I’m also missing bits that should be there so I figure it all sorts out.
  • I get to have perky Barbie boobs – OF MY OWN CHOOSING! – for the rest of my life courtesy of insurance. Those of you without having nursed three children may not realize the importance of this. And yes, picking out a size is both weird and exhilarating. Then, there’s the tatooing process – something else I never would have imagined, and in some ways I feel empowered because I am now “edgier” – right?!
  • I’m a little less inclined to sweat the small stuff – or even the semi small stuff. This year’s Christmas cards were wonky, the presents were wrapped by my six year olds ( and yes, they bought me two pillow pets and a bathmat for Christmas), – and NO ONE CARES! And I’m happy with my pillow pet! It turns out that a lot of the stuff you thought was important just isn’t.

A friend asked me last night about resolutions. For the first time in many years, I don’t have any. I have hopes – that we get and stay cancer free. That my kids continue to be as happy and curious and excited as they have been. That our puppy continues to entertain, love and grow. That our family and friends have success and happiness and all the good things there are in 2014. I will try to walk a little more, eat a little better, (I did get a fit band for Christmas!) and take care of myself. But, all of that is gravy.

I resolve to live more in the moment than before. We have always been planners of the maximum variety and I think the edge has been dulled. Let’s go on that trip we put off (yes, I got to go to New York to see Christmas lights with JUST DAVIS  this year as a present!)

Our new motto: go with happy. And if that means three kids out at 37 degrees on their new scooters, then that’s just what it will be.

I wish everyone a happy HEALTHY prosperous new year, and joy every day.

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And now the dog has cancer

I am overwhelmed. The frivolity and happiness of the new puppy muted by the terrific disappointment and anguish of the dreaded C word again reappearing in our lives.

Like before, out of the blue. Like before, no real symptoms. Like before, fear and pain and sad.

Our 10 1/2 year old first “fur baby” Cameron didn’t eat his kibble the last day we were gone. When we came home, he was less than enthusiastic. But it could have been that we brought along a 10-week-old puppy. I mean, we knew he wouldn’t be thrilled by that addition in general, but this was downright weird. He is totally and completely food motivated.

We saw him breathing shallow, and thought – maybe there’s something in his mouth, on his neck.

Imagine our shock and surprise when we found out that based on the Xray, he had a “mass” – likely cancer.

The frenzy, the questions started anew. Where do we go for another opinion and soon? Where do we go to get the best care? What can we do? Will he die?

I cried more than when I was diagnosed. Somehow this felt worse – I was powerless. I have been a red ugly raw all weekend.

We still don’t know – a trip to the Texas A&M emergency room netted us a a 10am slot on Monday morning for a CT scan and diagnostic follow up with specialists – the best in the country. He will have a CT guided biopsy (eerily familiar to those of us who have undergone the X ray guided biopsy – at least he will be asleep!) The earliest we could do here in Austin – surprisingly – was the 15th of January.

It has been the longest and shortest two days in the last year. Going from ebullience at puppy cuteness – she chases her tail! she walks sideways! she has a white spot on her chest! To the recognition that our other dear dog, my therapy dog, might instead be lost this week.

We told the kids, this time avoiding the term cancer bugs – Davis was concerned that it would echo too much on their minds to my battle (cancer = death??) We told them there was a mass that wasn’t supposed to be there and there might be drugs to get it better. Dad and Cameron will go to the best doctors in the country on early Monday morning for the tests that will allow the doctors to see his body better. But, there might be a chance Cameron doesn’t come back. There might be a chance that he would die.

Henry said “Well, Mom, you’ve been through lots of surgeries and have been fine – I’m sure Cameron will be fine.” I am sure of it too, because this time around, like last time, the other option is unthinkable.

You may think me sappy or sentimental for being so attached to our dog, but I point you to my last two years and the net that was my constant support – Cameron amongst. And, now I am granted the glimpse into the world of those around the cancer patient – the frustration, the grief, the overwhelming sad. I feel what so many felt for me.

I guess the good news is that Cameron doesn’t know the fight he faces. But the rest of us do, and we see the end in sight. Much closer than we expected. As is always the case.

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Why NOT a puppy?

There are times when I find my journey has changed my outlook. Holidays are certainly one of those times. I was always a Christmas girl – my grandmother was literally Mrs. Claus on her stocking and it rubbed off. Last year, this year, more special – cramming as much fun and frolic into the season. The elf, bon bon parties, extra big live trees, etc. This year, a puppy.

Yes, a puppy.

Just about everyone thinks I’m crazy. I have been working on Davis for over three months, but I desperately want a puppy and we are getting her on December 26th.

I was thinking today about why.

Cameron is a great dog – my therapy dog and companion in all of this and in all of our last ten years. He is such a good dog with the NOTABLE exception of the counter surfing – only one place in the entire kitchen is safe – a three foot square plot of land at the back of the range. But he’s getting old. I want to spare my family the pain of losing a dog and having a void. I want our new dog to enjoy his company, to teach him, and for him to have a burst of puppy energy.

But I’m sure there’s some Freudian reason for my desire – a cathartic rebirth, seeing my mortality reflected in the eyes of my dog, an existential crisis.

For me, it’s the pursuit of happiness. What’s a few hours of sleep missing, a few chewed fingers, an extra mouth to feed, when you consider the joy and love that will come. Of course I say that now before we are inundated with housebreaking and a pouting septuagenarian.

This week, this holiday, may your gifts be merry and bright, and may you be 10% as excited as my kids are about the presents that await them. And 1% as excited as me.

 

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