Hitting the Wall.... And Then Climbing Over It!

We have 77 days left in our campaign on indiegogo-  http://www.indiegogo.com/ZackGow?a=740312 Donations, through the site, have started to dwindle, so I continue to look for new and exciting ways to advertise.

In visiting the website for Yale's Center for Dyslexia & Creativity , I came upon a list of successful people who have dyslexia. Many of them didn't have their dyslexia diagnosed, until late in life. Largely, they seem to see this as a good thing- their perseverance, creative thinking, etc. helped make them the people that they are today. I think that it is wonderful that they were able to overcome the difficulties that their dyslexia presented!

On the other hand, I don't want Zack to be defeated by a system that, currently, does not provide appropriate accommodations for students with dyslexia. If he becomes so disheartened that he gives up altogether, I will be heartbroken. SO, I am going on another letter writing campaign. I will be sending personalized letters to each of the individuals on that list, provided I can find their contact information, and asking them to spread the word about Zack's situation and need.

My decision to do this was reaffirmed when I saw the following piece on NBC's today show...

Couple Building American Palace

If you don't have time to watch the video, here's the blurb:

New documentary “The Queen of Versailles” follows a Florida couple, David and Jackie Siegel, who set out to build the biggest house in America when the recession caused their opulent lifestyle to crumble. Jackie and filmmaker Lauren Greenfield talk about the surprising turn of events neither of them expected.

This feeds right into my "life isn't fair" issue and the fact that there are some in this country that have more money than good sense. I know that the wealthy have no obligation to do charitable works and there are, certainly, charitable organizations that would benefit more than "just" Zack from funding. However, I am disheartened by the fact that Today believed that this story was newsworthy. And, if you didn't watch the video, you will be relieved to know that the couple has recovered and are hoping to sell the home, upon completion. If they are unable to sell it, then they will just have to suffer through and live in it. The house with the bowling alley. Sad.

Really, I hope that their take away from this is that "things" will not bring them happiness, especially when times are tough! And, to that end, I am off to write some letters!

Defualt.... Default.... which one looks right?

Over this weekend, we have had the pleasure of hosting extended family for the wedding of my brother in law, Jay and his lovely bride, Claire. It has been an uplifting celebration and we are thrilled to have been a part of it. Even more thrilling, however, is the opportunity to watch Z interact and  his cognizance of spelling. "Spelling" you say? Yes, spelling. I don't recall how it came up, but over the weekend, Z tried to spell "default." His father stopped him, mid-spell, when he made an error, and corrected him. Z, looking dubious, walked over to a piece of paper and wrote the word, as his father had spelled it, and then substituted in his original spelling. Once he had done that, he was immediately able to apply the skills he's gained from RL at Gow and recognized that his father was, indeed, correct.

This might sound inconsequential to you, but, for him, it is a huge milestone. He may not be able to hear the sounds, but he can look at the word and, using the "rules" from RL, he can figure out where it's wrong and how to correct it!

And, THAT is what a GOW education will get you!

Ready for a Challenge...!....?

In one week, Zack will have finished his first year at The GOW School, which specializes in language based learning differences. In one year, we have watched him grow from a self-conscious, unsure, insecure boy into a confident, well-rounded, smiling young man. He is so proud of what he has accomplished (and rightly so) and no longer thinks of himself as a stupid kid who just can't learn.


If you've ever been in our position, you know what I'm talking about. Watching your child struggle, day in and day out, through 7 years of academics, breaks your heart. Yes, we are lucky because he is healthy and able bodied. I know that things can always be worse. But, as a Mother, it is gut wrenching to watch your happy, bright boy slowly lose self-worth because of something beyond his control.


For parents of an LD child, the "system" can be difficult, at best. Well-intentioned educators, psychologists and administrators offer one-stop-shopping solutions for an LD child, regardless of what they really require. This is not their sinister attempt to deny your child access to resources- although that is certainly how it feels. School systems, simply, have not recognized that language based disabilities make up the majority of their LD population.


Dyslexia is neurobiological in origin. Schools refer to Dyslexia an SLD (Specific Learning Disability) and define a Learning Disability as a disorder in one or more of the basic processes involved in understanding spoken or written language.  It may show up as a problem in listening, thinking, speaking, reading, writing, or spelling or in a person’s ability to do math, despite intelligence. The National Institute of Health's studies show that 80% of students with an LD have a form of Dyslexia, yet only one in ten students with Dyslexia get appropriate special education services. How is that possible that 80 students out of 100 have dyslexia, 8 of them are serviced with appropriate programs while the other  72 are placed in programs that don't address their needs, or ignored completely? Why is the majority of a school's special education funding devoted to programs that are destined to fail? It's mind boggling!


In our case, Zack has an above average IQ, but great difficulty matching sounds to symbols. When something is presented to him, orally, he remembers things very well. However, he has so much difficulty with decoding text that meaning is lost; Once he gets through decoding each word, he has forgotten what the string of words said and can't tell you anything about what he has read.  He also has great difficulty with note-taking because he does not have automatic recall of spelling, and can't reasonably sound out a word/string of words while continuing to listen to the teacher. In addition to those struggles, he lacked executive function/organizational skills. One teacher referred to him as a "nutty professor" running down the hall with papers appearing to jump from his being as he moved.


So, once we realized that his school was unable/unwilling to implement a program that would be effective, we elected to move Zack to Gow. The tuition at Gow is not cheap. It is, in fact, quite expensive and, for most families, unattainable. For Zack's first year at Gow, we took a gamble. We chose to spend the boys' college funds on ONE year at Gow, in hopes that we would be in a better financial situation, or eligible for more aid when the next year rolled around. Within a month, we knew that our gamble had paid off. Unfortunately, the return on that investment is not a financial one and we now face paying for another year, and then another after that, etc. with the goal of keeping him there through High School graduation. 


I am humbled when I contemplate finding the money for another year. The school has been generous with financial aid, but the balance owed would still be half of my net income. Our families have also been very generous, but they are also of limited resources. As I macabrely joked with admissions; I am running out of rich relatives who might leave me an inheritance. 


So, this is where I need some help, folks. I cannot bring myself to ask people for money, directly. However, I CAN bring myself to ask for fundraising ideas, or contacts/connections to people who might be able to offer help, in any capacity, in our endeavor to keep Zack where he belongs. I would do anything for him, and am at a loss. Please repost this blog on your wall so that your friends see it and pass it on to their friends, etc. With that act of good will, I have to have faith that we will be connected to someone who can help. Heck, we will even sell "ad space" on Zack's forehead for the right price! (kidding!)


Please consider helping us with a posting chain. It won't cost anything and has the potential to make a HUGE difference in a young man's life.


xoxo
Becky

Labels....

Labels are so easy to apply.... accept.... share....even, embrace.  Some labels are subjective (That is brilliant! That house is gorgeous! He is stubborn.) Some are even helpful: Caution! Explosive! Danger! As a wife mother human being, I have been guilty of labeling. We all have, I suppose. Our brains like to have things categorized and labels certainly help the world make sense to us. The trouble begins when the applied label doesn't quit fit the labelee (is that a word?) Please bear with me while I share the story of how we found the "right" label for Zack.

Zack is our first born (gee, maybe we should play "count the labels in this post.") He was the first grand child for my Mom and his first five years (or so) were everything that we could have asked for. He had a natural schedule that allowed us to sleep, initiated potty training at 16 months, and entertained all that he met with those blue eyes and that big smile.

 He has always been a fiercely independent, self-sufficient child. Even at the age of 2, when he had the flu and I wanted to sleep in his bed, instead of coming and going all night, Zack would say "You go your bed now, Momma." He just didn't want me in his space. During his play time, he relished in creating and building new things out of every day, household items and was always SO proud to show us what he'd done.  We visited the library every week and sang our ABC's, checking out age appropriate books, working to learn the basics of letter-sound correlation. As a teacher, I just knew that I would have Zack reading in no time. Learning the letters wasn't so difficult for him, but when it came to understanding/remembering the sounds that the letters made, it was a chore.

     Since Zack was our first child, I thought that this was just normal; that his Kindergarten teacher would use a magic formula to teach him what I could not. By end of first grade, we realized that Zack was not learning at the same rate as other children. His teachers chalked it up to "immaturity," so we waited. By the middle of second grade, we were spending hours on homework and Zack was in tears, out of frustration. I began to talk with his school about testing him for a learning disability and they suggested waiting a little longer to see if he might catch up. At the end of second grade, I requested the testing and was told that he really didn't seem to have a disability, and he wasn't tested. By mid- third grade,  I put my foot down and demanded testing. I insisted that Zack was far brighter than his reading and writing were showing.

     The initial testing showed an IQ of 126 and a reading level 2 grades below where he should have been. The school told us that Zack would now be classified as having a "learning disability" and placed in a "mainstreamed" classroom with some "regular" kids and some special education children. We quickly realized that this would not be sufficient for his needs. The classes moved more slowly, so he was bored. He was given reading support, but it dealt more with comprehension than decoding words. Zack continued to struggle to decode and we requested further testing. At that point, the district informed us that they don't do prescriptive diagnostics and that if we wanted that,  they would pay to have independent testing done.

So, we took Zack to a reading specialist and he was diagnosed as having phonological dyslexia.

     This diagnosis was a huge relief to us. Now that we knew WHAT it was (a-hem, we had a LABEL), we thought it would be easier to work around or through it. We worked with our Committee on Special Education (CSE) to formulate a plan, utilizing the Wilson SRA program and, immediately saw some improvement. We were thrilled to see Zack come home less frustrated every day, but homework continued to be a challenge.  When Zack went to Middle School, we saw a noticeable drop in his performance. He would do his homework but forget to turn it in or lose it between home and school, and he was as frustrated as ever with reading. He was placed in a computer program called Read-180 which claims to have had great success with students with learning disabilities.

     Unfortunately, the program did not work for Zack. He was able to listen to a story and answer comprehension questions (that were read aloud via computer) but could not actually read the text. His writing continued to be a struggle, impacting his written assignments, as well as note taking. His difficulties in reading impacted every area of his education. He was assigned to a "resource room" program, where he went for re-teaching and homework assistance, but continued to struggle. Conferencing with his teachers, administration, and the special education department did not help. The district offered him MORE resource room time and MORE Read-180, so we were looking at MORE of a program that didn't work. All the while, we were watching Zack become more and more defeated. He hated school. He hated his teachers. He hated us for our constant hounding about school. Around the middle of 7th grade, we realized that something had to give, but we had no idea what.

      We took Zack back to the reading specialist for further testing and got confirmation that he was falling further behind in his reading skills. When asking for suggestions, the Doctor suggested many things, including smaller class sizes, and use of a laptop with a text to voice program for Zack's textbooks. He also suggested a daily phonics program, such as Orton-Gillingham, and stated that Zack needed to "over learn" the rules of phonics until the rules became second nature, helping him to decode more fluently. When we took the recommendations to our CSE meeting, we were told that Read-180 is one of the best programs available and that it focuses on phonics enough to help Zack. When we grew more adamant about the need to implement an Orton-Gillingham based program, we were told that the district didn't have the funds and that we could not "compel" them to follow the doctor's recommendations. They wanted to continue with more of the same and we were not going to let another year of frustration trudge by.

      A friend had mentioned The Gow School, a private (read, expensive) boarding school specializing in Dyslexia. The school is only 30 minutes from our home and would not come cheap. The tuition was more I make teaching in a year. After much debate, we decided to have Zack interview at the school and file for financial aid. Zack was accepted and we were offered slightly less than half in financial aid. Even at that price, the tuition went far beyond anything we would be able to afford. After talking with current students and their parents, as well as many dyslexics who had not gone to Gow we felt that it would be worth the price to send him there. So, we reluctantly asked my parents if we could use the money that they'd set aside for Zack's college education. WITH the financial aid, it was just enough for a year at The Gow School. Our hope was that one year would give him enough basic skills to get him through public high school. We have maxed out every credit card and are in the hole every single month in order to keep him in school there.

     Four days into the school year, we knew that we had made the right decision. In addition to assistive technology on his own laptop (like electronic textbooks with text to voice, etc.) he was in small classes with teachers who were trained in Orton Gillingham- many of whom were former students at The Gow School, and dyslexic just like Zack. There was no more shame or fear of participation because all of Zack's classmates were in the same boat. The school has high expectations and Zack earns high grades. He has grown so much in the three months that he has been there. I fear for what will happen to him if he returns to public school, so I am on a mission to keep him at Gow. How? I guess that's why I'm here. Got any suggestions???