Decision Time

The Twin Cities Marathon is less than a month away. New York Marathon is less than 2 months away. I’ve been (sort of) training all summer….more or less.  OK, less.

I had big plans back in May to have an incredible summer of training, and then life happened. Losing my father really took the wind out of me, and the spring out of my step.  In Joan Didion’s memoir “A Year of Magical Thinking” she writes that when a child loses a parent many times they re-evaluate their life.  This was definitely the case with me.  Anytime I did a high intensity workout I kept thinking, “Why am I doing this? What is the point?” Honestly.  Why am I getting up before the sun…in June and July…to run around in circles and get out of breath?  At one point one reason I did this was for the beauty of eating anything I want, and it was awesome.  But, after turning 40 I’ve noticed that no amount of exercise is going to allow me to eat 3/4 of a pizza at Pizzeria Lola’s along with 2 beers, some side dishes, and ice cream without some consequences in the region of my butt.  Which brings me back to…really, what is the point of a track workout?

Then my hamstring started to hurt.  It doesn’t hurt all the time, just when I would put speed in or sprint up a hill.  Although this is my deficit and area that I need the most help, I cut out track and hill workouts because they hurt. And they are hard.  And I generally hate them.  I added in more miles with friends and some slow long runs through the woods, because those fill my soul and felt good.  20 mile run?  No problem.  Want to meet the next day for 7 miles? See you then.  Track workout…no thank you.

According to my training schedule, which I’ve generally ignored all summer, this is my last hard week of training before the taper. Yet, I don’t feel like I’ve worked on my deficits enough (speed, strength) to even deserve a taper. And so I must make a decision, and soon. Will I race TCM or treat it like a training run for NYC? Will I race either? Perhaps this is the year I just enjoy the sights of both marathons and forget about the time. Will I be satisfied if I don’t push myself?  Maybe running two marathons in less than a month will already push me straight over the edge….

#1 started 8th grade this fall. Its his last year in middle school and soon we will need to make a decision about high school. He attends a small, charter school. It has been a fabulous experience for him thus far and he has the option to stay at the school through high school. Twin Cities Academy High School was just ranked #42 in the country by Newsweek magazine, and the top high school in Minnesota. He has gained confidence, will attempt to write again (something he wouldn’t do in 4th and 5th grade), and has improved his reading skills. The school pushes him in what is hard for him. Why do I falter?

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Because the school is small. Because I don’t know what he will do for advanced math at a small high school (next year he would be taking their most advanced class). Because there is no orchestra and he plays cello. Because there is no robotics club and his favorite thing to do at the state fair is to watch high school robotics competitions. Because there is no cross-country ski team, the sport he has poured himself into year round for the last couple of years. Because, perhaps he needs to spend high school exploring his gifts and his interests instead of grinding away at writing assignments, vocabulary workbooks and reading comprehension exercises.  Because I feel like I made a huge mistake when I moved him to a different school in 1st grade, which I thought would bring out his strengths….but a consequence was a total failure to teach him in his areas of weakness.  

I don’t want to make a bad school choice decision for #1 again.

At his small school there are no cracks for #1 to fall through. There is no place for him to hide. The school is structured to help students achieve in areas that are hard for them and they excel at this. But, what do I do with the kid that needs help, may not (who am I kidding….almost definitely will not) find help at a HUGE public high school, but he has the chance to shine in the areas he is most talented in? His English class in the public high school may be as big as his entire graduating class at his current school? A quiet, well-behaved child with a learning disability doesn’t stand a chance unless they receive A LOT of outside support.

If you need to choose, is it the most important to work on your gifts or your deficits in high school?

Ugh.

I have no idea.

We have until February/March to make our decision. Maybe I’ll string together some friends so I can go on some very, VERY long runs between now and then to process…..work with my gifts or mileage and verbal processing….and leave those hill, track workouts and tempo runs for another year.

We won’t help

I finally had the meeting.  The meeting that was cancelled because of Polar Vortex #2.  The meeting that I thought would start us down the road of getting #3 individualized help.

That wasn’t the meeting that happened.

I was told he isn’t far enough behind yet. We won’t test him.

I countered with:

He hasn’t made progress.

He is far behind when you look at where he should be.

He gets further behind each day.

He is far behind if you look at his intellect.

He’s had a ton of interventions and he is still just creeping along with progress.  The interventions need to be more intense.

I was told again and again….he’s not far enough behind the rest of his peers yet.  He is behind, but not far enough.

The teacher sat there and said how he is reading at a level of a kindergartener and hasn’t made progress this year which is very concerning.  He does not know the sight words automatically.  And he knows less sight words now than he did in the fall.  Yet, he isn’t far enough behind yet.  They won’t test him.

What about writing? He can barely write his letters.

What I heard was……We won’t help.  I know this is not what they said, they told me about what the classroom teacher will do, and how the special ed. teacher can answer her questions, but this is how I feel.  We won’t help. Over and over they said he isn’t far enough behind his peers yet.  On a standardized test for the district curriculum he is not enough standard deviations behind the rest of his peers.

I sat in an office with the principal, an LD teacher, a school psychologist, the classroom teacher, and a student teacher (who I probably completely freaked out) with tears streaming down my face saying “I’ve been down this road.  I’ve already had two children fail.  I want this time to be different.  Please help this be different.  If we all work together, imagine the difference we can make. There are so many children that need help.  Let’s start here. Let’s make a difference and help him sooner rather than later.”

I was met with stone faces by everyone except the classroom teacher, who was also tearing up by this point……we won’t help.  Perhaps their stone faces were because they were following orders from people higher up.  Perhaps district office has tied their hands.  I don’t know.  My takeaway was we won’t help.

“We can’t help you because of the laws in this state.  We must follow the laws.  Perhaps you should put your energy into changing the laws surrounding this topic.”

This was their solution to the problem.  Oh yes….that sounds simple.

“Why do you want him labeled?” they ask.

I said, “I don’t want him labeled.  He is labeled.  This is the reality.  He is dyslexic.  I want him to have help for that.”

The LD teacher says, “I can’t label him dyslexic.  That’s a medical diagnosis.”

Oh, don’t get me started.  Honestly.  My head was exploding.  My insides were churning. That was a discussion for another day.

To say I’m devastated is an understatement.  Where can I go to get my children the help they deserve? I want them to read.  I want them to write.  I want them to feel successful in school….and not dread anything that requires them to write a sentence or read a paragraph.  I want them to live up to their potential academically.  I want them to not have their self-esteem crushed.

“Here is some information on why you shouldn’t label a child or test them before the age of 8.” the LD teacher tells me.

This is when my adrenaline kicked in.  Fight or flight…..I chose fight.  I couldn’t hold back any longer.  I stared into her eyes and said, “That piece of paper is crap.  Research does not support that anymore.  How dare you tell me that catching my child’s dyslexia early and fighting for him to get services is not what he needs.  I know what he needs.  I’m his mother.  I’ve been down this road 2 times already, and I refuse to watch one more child fail.  I will not do it again.  I’ve pulled 2 kids from schools where they weren’t getting help.  I’ve worked very hard to put them back together.  I WILL NOT DO THAT AGAIN!  This time I want my child to get help before he falls apart.  Before the anxiety.  Before the low self-esteem.  Before they hate school. I honestly can not understand why you believe its OK to not teach him with the methods he needs in order to learn how to read. I do not understand why my children get punished because they are smart enough to not completely fall apart academically.  I do not understand why I am being asked YET AGAIN to sit back and watch my child make very little progress while I watch the rest of his peers learn how to read with relative ease.  I have a diagnoses.  I have paperwork saying he needs intensive and individualized help.  I do not understand why we can’t work together and get him the help he needs.”

And then I started to cry uncontrollably, put my jacket on, and shoved the papers in my purse that told me why they won’t test him.

Meeting over.

My heart is broken.

Hitting the wall

Marathon runners talk about hitting the wall.  This happens, usually around 18 miles, when your body wants desperately to stop the madness but you need to make it to the finish line (if it’s a race) or a couch at your house (if it’s a long training run).  To get past the wall I focus on simply putting one foot in front of the other.  As long as I keep moving, progress is made.  This is where determination, grit, and a high pain tolerance comes in handy.  Also, some well placed stubbornness.

This week I finally heard back from the principal at #3’s school.  Last week handed in his assessment which clearly states he will qualify for special education and details how intense the correct interventions need to be NOW so that he doesn’t slip into failure (I would argue a deeper failure).  At first I heard back nothing.  So, I e-mailed the special education teacher and principal to let them know the paper work had been turned in.  I asked a simple question, “Is anyone at our school trained in an Orton Gillingham method?”  Again, no answer.

Finally, yesterday the principal came into #3s first grade classroom while I was there and asked me to stop into his office when I got a chance.  Yeah!  Progress.  I really like this principal.  He is responsive to parents and truly a nice guy.  He has a great love of what he does and it shows.  A couple minutes later I sauntered down to his office with high hopes of having a great conversation. He would share with me how quickly the school is going to move because of the thorough assessment I provided. We would end it with a smile and perhaps even a high 5.  Go team!

I’m so dumb.

He started by going over the qualifications for special ed. and I realized this was not going to be the conversation I had pictured.  First, there needs to be a discrepancy between achievement and ability.  #3 has a huge discrepancy.  He is labeled gifted by the district (and this was confirmed in his outside assessment) and is in the bottom 5% for reading achievement and phonemic awareness according to his psychological testing.  Second, his level of achievement must be very low.  Again, we have mastered this one…..he is below the 5% mark.  Third, he has to show no progress.

And this is where we hit the wall…..according to the principal.

#3 is holding his own, to a very low degree, in the classroom (I completely disagree with this).  In other words, he hasn’t failed yet according to the districts standardized testing.  He is on the low side, but until his standardized tests show that he is very low and he is falling further and further behind his classmates, no assessments will be made.  Its all about the number on one test in the Mondo Reading Curriculum.  What I say doesn’t matter.  What his classroom teacher says doesn’t matter.  What an educational assessment says…that doesn’t matter either.  He hasn’t failed enough.

I was stunned.  Am I supposed to hope for #3 to profoundly fail so that he can receive help?  Really?

Oh, but there is a solution the principal says.  The classroom teacher is going to do the Sonday System (Orton-Gillingham based) with him and another child.  I was speechless because how do you respond to insanity?

#3’s teacher is a master teacher.  She is disciplined, incredibly hard working, doesn’t waste a single second of instructional time in the classroom, and very skilled….however, she is human.  She has not been trained in how to teach children with dyslexia.  She has not been trained in the Sonday System or any Orton-Gillingham method and has not been trained in how to teach children with dyslexia.  So much of teaching a learning disabled child is about the pacing and the understanding of how frequent you need to go backwards and review.  These children learn at a very different pace and with very different instructional methods than other children….THAT IS WHY THEY STRUGGLE IN THE CLASSROOM.  A classroom teacher should not be expected to do everything twice, once for 90% of her classroom and another time for the other 10%.  Sometimes this is appropriate, but this should not be the final solution.

BTW, she has about 25 kids in her classroom, many of them with their own set of special needs: behavior, social, academic, highly gifted, poverty, struggles at home, etc.  She is supposed to figure out how to use an entirely different curriculum, find the time to do intense intervention (at LEAST 3 hours a week) AND teach the rest of the class all on her own?  Again, she’s excellent, but not a miracle worker.  This is not fair to her.  This is not fair to the classroom.  This is not fair to #3.  So much of what happens in the classroom for reading and writing does not apply to him, but he will be forced to sit there and watch his classmates understand and catch on to what is happening why he is continually learning “this does not apply to me” because the way reading is taught in the classroom is wrong for how his brain is wired.  Confusion sets in when a child is asked to do the classroom reading curriculum, guided reading and also a specialized curriculum.  That is 3 different approaches to tackle something that is already incredibly difficult…..when only one will work…..the other two only create anxiety and failure.

But, no help outside of the classroom will be given because he hasn’t failed enough yet. And I have yet to get an answer to my original question, has anyone in the school been trained in how to teach children with dyslexia?

I have hit the wall….in this case it’s the wall of crazy policies and bureaucracy in the district.  No help until your child is a puddle of tears on a daily basis, is so far behind his peers there is virtually no hope of getting caught up, and you and your child are both filled with hate and rage towards school.  Lovely.

Time to put one foot in front of the other.  Remember my form.  Breath.  Don’t freak out. Believe in myself.

I have trained hard for this.  I’ve been down this road before.  I know what needs to happen.  I have a good playlist.  I have friends and family along the road yelling encouragement, taking extra baggage, and handing me nourishment.  I have grit, determination….and let’s not underestimate my well-placed stubbornness.

I can’t see the finish line, but I know it’s there, and I will work with everything I’ve got to get there.  On the other side of the wall will be a child who believes in his academic capabilities and is given the chance to succeed.

family-27-2Failure is not an option.

When is it time to get your child tested?

Answer: When you have some money burning a hole in your pocket and you have a lot of grit.

Seriously.

First, financials.  Many places that understand and diagnose learning disabilities from an educational point of view do not accept insurance.  Which is particularly maddening because schools will not recognize/treat/accomodate dyslexia because it’s a “medical diagnosis” in their view (I can really flip out about this subject….since when are medical diagnoses not valid in the eyes of a school?).  Insurance doesn’t agree with this and tells you learning disabilities (aka problems in school) is not their issue because its not anything medical/health related.  Financials are just another area that parents are tossed around from one party to another with no one wanting to take some responsibility to help….and you are literally stuck with the bill.

Second, grit.  To go through this process you need determination and grit to face reality.  Determination just get to the process moving and see it through.  Grit to face what comes after the diagnoses.

Last night I sat in the office of the same educational psychologist’s office that diagnosed #1 and #2.  This time I was there concerning #3.  I had assumed he was dyslexic for years but didn’t have a formal diagnoses, paperwork and testing to back me up.  After a couple months in 1st grade it was clear I was going to need this to get attention so his teacher (whom I LOVE) wouldn’t continue to assume he just needs more time to practice reading the same guided reading books over and over and over…which quite frankly is a waste of his time.

Because I’m not homeschooling #2 anymore, and #4 is in school this year, I have time to be in the classroom volunteering.  On Tuesdays I volunteer at a program called Rocket Readers in #3’s first grade classroom.  I have a small group of some of the lowest readers in the classroom….because that is where my child is.  While another little girl, who started at a much lower reading level than #3 continued to improve through September, October, November and now into December, my child stayed at the exact same level with absolutely NO IMPROVEMENT.  The little girl has begun to sound out words.  She has different decoding methods.  Reading is still hard, but she is improving.  #3 can read some of the books at his level, but he is reading the pictures and using his background knowledge.  He is not reading the words.  He is not looking at the letters, understanding the sounds and putting the sounds together into words.  He could read a little book about a fire station because he has been to fire stations, I have read him books about fire stations, he had a unit in kindergarten about fire stations, etc….not because he saw the word “h-o-s-e” and can sound it out using phonics rules and know this word is hose.  The teacher continued to tell me that he was smart, a good student and he just needed more time.

Absolutely not.

I’ve been down this road before.  More time would only let him fall through the cracks more.  Let him fail further.  Bring about frustration, anxiety and a hatred of school.

He needs to be taught with different methods, something that is compatible for the way his brain is wired.  A whole language and guided reading approach will never EVER work.  He needs a systematic approach with phonics (aka the Wilson Reading System).  It was time to get the paperwork to back me up.

As I sat in the educational psychologist’s office hearing the words, “Yes, he is definitely dyslexic.  Its very obvious.  No one can question these striking results.  He needs appropriate interventions immediately.  It is so good you came as early as you did.”  He is more severely dyslexic than #1, but not profoundly dyslexic like #2. If I want to pursue special education, he would definitely qualify. I was filled with a sense of relief.  I was right.  Its always good to be right, isn’t it?

Later, at 3:00 AM, came the sense of dread.  Holy crap.  I have 3 kids with dyslexia.  And I live in a district that refuses to help them.  What am I doing?  Will this be a big huge fight too?  Will this principal treat me the same as the last principal (horribly)?  Will these teachers dismiss me and the needs of my child?  Will this school tell me its not their responsibility to teach him how to read and write and if I want that to happen I better find a tutor or private school?  Will anyone listen to me and understand that teaching a child with dyslexia is not outrageous, its just different?  (insert string of words I’m not going to type out……)

And then the alarm went off.  If I would have had time to get new spikes for my shoes (St. Paul is covered in ice right now) this would have been the perfect morning to get out my angst on a long, fast run.  Instead I hit off and prayed for strength, determination and grit.

Psychology professor Angela Duckworth defines grit as “sticking with things over the very long term until you master them.” She writes that “the gritty individual approaches achievement as a marathon; his or her advantage is stamina.”

Marathon?

Advantage is stamina?

Grit.

Its the one thing I actually do have.

Time to get those spikes for my shoes.  The road ahead may be treacherous, but with the right equipment, and a healthy amount of grit, anything is possible.  Especially when preserving #3s infectious personality is at stake.

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Happy Dyslexia Awareness Month!

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October is Dyslexia Awareness Month.  Below is a list of events from the International Dyslexia Association – Upper Midwest Branch.  I have provided links to register for the events on the title of the event.  Hope to see you at some point this month.  Let me know if you are going to an event.  I will definitely be at the screening of The Big Picture: Rethinking Dyslexia with #1 and #2.  It’s pretty embarrassing that I haven’t seen it yet!  I have heard it excellent.  There is also an interesting webinar about assessment if you have questions after reading my post yesterday, What do I do if my child is struggling with reading?

If you don’t live in Minnesota, please check the International Dyslexia Association website for events in your area.

Dyslexia Awareness Month Events


Learn more about dyslexia and other language-based learning disorders at one of these dynamic October events!

IDA-UMB Webinar:  Deciphering the Tests 

Tuesday, October 1, 2013

7 — 8 p.m.

Registration is free, but space is limited!

CEUs available for $10 fee.

The information provided in tests and assessments is invaluable in determining an LD learner’s cognitive strengths and weaknesses and helps inform the best approaches to the child’s education. This presentation will review what tests commonly are used to assess learning difficulties, what they mean and how parents and educators can utilize them to develop effective plans for special education.

Speaker, Ray Boyd, is a Minnesota Licensed Psychologist and the director of diagnostic services at Groves Academy who has been working with children and adults with learning disabilities and attention disorders for nearly forty years.

Groves/IDA-UMB Workshop: 

Why Word Origin and Structure are Critical to Reading Success

Thursday, October 3, 2013


6:30 – 8:30 pm


Groves Academy, 3200 Hwy 100 South, St. Louis Park, MN 55416

Registration is $30

Presented by Marcia Henry, Ph.D., Professor Emerita, San Jose State University Morphology, or the study of the structure and origin of words, describes how words are formed from building blocks called morphemes, which are the smallest units of meaning in a word. This 
session will provide an overview of morphology and why it is important to explicitly teach these skills to early or struggling readers.

IDA-UMB Webinar:  School SLD Assessment vs. Private Neuropsychological Assessment

Wednesday, October 9, 2013


7 — 8 p.m.


Registration is free, but space is limited!
 CEUs available for $10 fee.

School testing and diagnostic neuropsychological testing are different in their purpose and depth, the specifics of their results and scope of their recommendations. In this webinar you will learn several key distinctions between the two types of assessment so that you can make an informed decision about which is best for your child.

Jennifer Bennett, M.S., Licensed Psychologist, focuses her work on neuropsychological and educational assessment. At BrainWorks, P.A., her private practice, she conducts comprehensive evaluations with people ages 5-100 who are experiencing difficulties related to learning, information processing, and cognitive development.

FREE SCREENING — The Big Picture: Rethinking Dyslexia

Saturday, October 12, 2013


1 — 3p.m.


Groves Academy, 3200 Hwy 100 South, St. Louis Park, MN


Registration is free, but space is limited!

Join IDA-UMB and Groves Academy for a free screening of the HBO film, The Big Picture: Rethinking Dyslexia, directed by Robert Redford’s son and the father of a child with dyslexia. The film provides personal and uplifting accounts of the dyslexic experience from children, experts and iconic leaders. The screening will be followed by comments and a question-and-answer session with Head of School, John Alexander, IDA-UMB President Kelly O’Rourke Johns, Executive Director of The Reading Center, Cindy Russell, and others.

The Reading Center’s Dyslexia Simulation: Walk in My Shoes

October 15, 2013


7 — 8:30 p.m.


Premier Bank, North Broadway and 37th Street, 3145 Wellner Drive NE, Rochester, MN

Is there a dyslexic person in your life? Do you teach a dyslexic student? You will learn what it can feel like to be dyslexic in school when you participate in this Dyslexia Simulation. The session will last 1 1⁄2 hours and is highly participatory. Appropriate for older teens through adults.

Film Screenings – Dislecksia: The Movie


Thursday, October 17, 2013

3 locations:

Carmike 10 Theatre, 230 Knollwood Drive, Rapid City, SD – 7 p.m.

Cinemark Century 14, 2400 South Carolyn, Sioux Falls, SD – 7 p.m.

TBA, Minneapolis, MN – 7 p.m

A powerfully touching and entertaining documentary that mixes humor and perspective with insight and analysis, DISLECKSIA: THE MOVIE explores many of the misconceptions surrounding dyslexia, while underlining the need for stronger awareness, early identification and social change.

No stranger to the condition, director Harvey Hubbell V explores dyslexia through a very human, personal lens, weaving his own lifelong experience, the research of scientists and the practice of educators, with the individual experiences of celebrities, politicians, and adults and children living with dyslexia.

Intergenerational, multicultural and socio-economically diverse, DISLECKSIA: THE MOVIE presents a complete picture and the most current information on dyslexia, promotes positive messaging, explores the power of family and community and is the first film to offer an alternative perspective of dyslexia as a learning difference, rather than a disability.

Panel Discussion: Successful Adults with Dyslexia

October 24, 2013

6:30 p.m.

Rochester Public Library Auditorium, 101 2nd Street SE, Rochester, MN

Registration is free but space is limited.

People with dyslexia are disproportionately represented among entrepreneurs and CEOs. Come to this panel discussion involving local individuals who are successful in their fields not despite of, but BECAUSE of dyslexia.

Parents, teachers and students (later grade school age and up) are encouraged to attend this discussion with local, successful adults who struggled with dyslexia throughout their schooling years, yet have found success in their careers. Hear their personal stories, learn some of their coping mechanisms and be inspired by how they became successful in a world of print.

Participants include: Dr. Brooks Edwards, Director, Transplant Center, Mayo Clinic; Lisa Stelzner, Senior Account Manager, Tempus Nova; Donn Sorensen, President, Mercy East Regional Medical Center

A Balanced Approach

#2 and I have been working a lot on his Russian history project that I talked about in a preview post.  He has been enjoying learning about czars, communism, the Cold War and practicing writing verbs in the past tense with the -ed suffix.  It’s amazing how quickly he can understand the big picture of history and political systems, and how slowly he remembers that even though he hears a /t/ sound on a verb, the suffix is -ed. (Will it ever cement in his brain?)

Tonight an interesting editorial was posted in the New York Times, Defining My Dyslexia.  The author talks about his own experience as a person with dyslexia, beginning with the labels that other children gave to him.  #1 and #2 have experience with being teased and labeled by classmates and peers as stupid, idiot, retarded, etc.

Currently there is a lot of discussion in the “dyslexia world” about defining dyslexia as a gift.  Books, conferences, and websites are devoted to discussing the upside of dyslexia….as though the negative doesn’t exist or is a side note.  I find this approach slightly nauseating when I am sitting for the thousandth hour correcting the direction of a “b” for #2,watching #1 struggle with writing a paragraph or seeing #3 unable to sound out the word cat.  Yes, I believe dyslexia is a gift for my children at times, but sometimes I want to mark the gift “return to sender” and shove it out the window.  I know that  reframing it has its time and place, but maybe a balanced approach is best.

For years I listened to teachers and administrators talk exclusively about #1’s gifts, as though being in 4th-5th grade and barely able to read, write and spell is just a side note of little importance.  I was told he was of above-average intelligence (directly after they told me how intelligent and advanced in math he is) and so if he is reading slightly below average, that’s not really a big deal….it was my job to remember his gifts and forget about the things that are hard for him.  I was told not to worry about the areas he struggles in.  I was told he doesn’t have a disability because he is good at math.  Huh?

I was glad to find someone else that thinks only focusing on the gifts of dyslexia is short sighted.  The author wrote:

“Not a disability? My years of functional illiteracy suggest otherwise. Today’s educational environment exacerbates dyslexic weaknesses….Until these disadvantages are removed, “disability” most accurately describes what young dyslexics confront.”

I just wonder how many of the educators that told me not to worry have spent hours with their upper elementary children trying to help them write one paragraph….just one…only to have the parent and child end up in tears because the task is impossible.  Have they ever sat down to do a science project and realized their child can’t read the directions for the assignment, let alone read any books for the research portion of the project? How many of those educators have had to open envelopes with standardized test scores that show your child is not only below average, but at the bottom of the district and state for reading and no one in the school seems to care.

But, I was told not to worry each time I brought up my concerns.  “He just isn’t a kid that is going to read well because he likes math.”  This was a constant refrain and it made no sense to me.  “Remember all the things he is good at.  Your job is to focus on those things.” It’s terrifying to think what would have happened if I would have left him in a school that ignored his needs while his peers pointed out his weaknesses.

The article continues, “Those affected by unjust diagnoses — like those affected by unjust laws — should protest and help redefine them….I believe that scientific evidence and social observation will continue to show that defining dyslexia based solely on its weaknesses is inaccurate and unjust, and places too grim a burden on young people receiving the diagnosis. A more precise definition of dyslexia would clearly identify the disabilities that go along with it, while recognizing the associated abilities as well. If the dyslexic community could popularize such a definition, then newly diagnosed dyslexics would realize that they, like everyone else, will face their futures with a range of strengths and weaknesses.”

So true.  A balanced approach.  Fight for it.  Your child depends on it.

Typing

Teach your kids to type and  provide a lot of time (years?) to practice.  Many children with dyslexia also have dysgraphia, which is a specific learning difficulty in handwriting.  For some reason dysgraphia does not effect drawing, violin playing, building with legos or typing.  Another one of those things that I suppose I should read about, but at this point I’m just going with what works.

My kids use the program Typing Instructor.  I like that I can manage the words per minute goal to give them a sense of accomplishment and prevent frustration.

And when frustration rears its ugly head, tell them stories about your typing class in high school….with real, actual typewriters.  They will look at you like you landed here from another planet when you describe the white-out sheet you had to use when you made a mistake.  It will make them quickly appreciate typing on a computer.

2 ends of the spectrum

Yesterday I wore shorts on my morning run. Today I hit off on the alarm and went back to sleep after I looked at the weather report and it said “WINTER STORM WARNING!”  Sometimes I just can’t deal with the continual shift between extremes and I want to shut down.

This was the scene on our front patio this weekend, ice melt next to sidewalk chalk.  Two ends of the weather spectrum are flip flopping.

winter and spring

This is also the life of a person with dyslexia, it operates at two extremes.  Even though my brain operates like this, I find it very difficult to teach to two extremes.

One of the essential pieces of teaching a student with dyslexia is progressing very SLOW through basic skills.  The student needs to gain automaticity so their working memory isn’t overloaded. When automaticity is achieved they can take in new knowledge instead of focusing on how to sound out a word or spell a word.  The more profound the dyslexia, the more practice and repetition is needed.

At the same time that basic skills are incredibly difficult, these children are also very intelligent and outrageously curious.  Many times critical thinking skills are well developed at an early age.  Children who can’t remember that -ed is placed at the end of a past tense verb can remember and put knowledge together about history (or another complex subject) very easily.

And that is where the difficulty lies.  I believe that basic knowledge of how to read and write are essential for education (I was a first grade teacher after all!), and the rest will follow.  How do you teach a very bright child that is yearning for more and more knowledge but takes a month of daily practice to learn the -ed ending? How do you keep him stimulated but teach the basic skills without completely boring him and even worse, having him believe that learning is the equivalent to shoveling snow in May (aka: horrible and to be avoided)?  Luckily, history and -ed both deal with the past tense.

To keep motivation up #2 is starting a project about Russian history.  Worksheets, flashcards and drills, while essential to helping him gain the amount of practice he needs, quickly bore him and he daydreams easily.  Also, I think he was getting a little tired of my blank stares when he would ask me questions about the political motivation of Stalin before, during and after World War II and I would answer with a weak, “Ummm…. let’s Google that.”  When I had no idea how to find Chechnya on a map (without Googling it) I realized I needed a little Russian history too.

Throughout this month we will flip flop between the complex history of Russia and summarizing what he learns by writing sentences in the past tense.  He will be practicing the skills he has learned this year with the Wilson Language System (syllables and suffixes) while learning about a subject he is interested in.  Check back throughout May and I’ll share other projects I come up with to help him review his basic skills from 4th grade.

After you got the diagnosis, then what?

Good question.  A lot of tears.  A lot of frustration.  Some swearing.  Temper tantrums. And then finally laying my head down on a table and saying to school administrators, “Honestly, I have never been more frustrated or beaten down in my life.”

Let me explain.

After #2 was diagnosed I was naive enough to think he would get the help he needed to be successful.  Because his learning disability was so severe and he was so incredibly behind where he should be, I knew he would qualify for special education and was looking forward to him getting the support he deserved.  The exact opposite happened….nothing.  A couple months later we did some more testing at school.  The same tests he had taken that summer.  The same tests he had taken that fall.  Now he was taking the same tests that winter.  The testing dragged on and on for weeks….all the while he was falling further and further behind.

They diagnosed #2 at school with some incredibly random LD not-specified-something-because-we-actually-don’t-know-what-we-are-talking-about label…who knows.  I was so angry I put the first draft through the shredder because the school assessment and initial IEP were incredibly non-helpful and vague.  At one of the many meetings concerning #2 I said, “We know the problem.  He’s dyslexic.  We also know how to help.  It’s called Orton Gillingham or a related curriculum.  This is not difficult and we are wasting time as he continues in a downward spiral and falls further and further behind.”  I was met with crickets…silence around the table.  Finally someone said, “Our school district does not recognize dyslexia.”

SAY WHAT?!?!?

I broke into tears.  There is research.  Books.  A local school. Curriculums.  A center at Yale…..all about dyslexia and YOU PEOPLE ARE TELLING ME IT DOESN’T EXIST? You don’t recognize it? Should I introduce you?  You can do a brain scan and see dyslexia….but this school district is telling me its not real?  Is that what they mean? This is a physical difference my child has and that is why he is having a difficult time learning, yet you are saying it’s not real.

Oh the rage.

I was speechless.

And that takes a lot.

Just when I thought I had found answers and we could move forward with a plan for both #1 (who had been privately diagnosed while all this was going on) and #2 I was met with a brick wall….and two children that were beginning to unravel.

Searching for concrete

This morning I woke up to another winter wonderland.

snow

I’m searching for concrete.  I need something hard to run on because I’m sick of feeling like I’m running on sand, sheets of ice or running backwards.  I want to wake up in the morning and know what the surface beneath my feet is going to be like.  I don’t want to guess anymore.  Do I wear spikes? How many snow drifts will I have to hurdle?  Are there hidden sheets of ice under the 4 inches of snow?  The thing with running on smooth concrete is that you can go fast because you aren’t guessing and wondering about every step.  Running is automatic, and you don’t need to think while you are putting one foot in front of the other.  You can enjoy the beautiful scenery and a wonderful conversation with your friends while getting exercise.

A dyslexic reader is also searching for concrete.  Before they are taught the mechanics and system of the English language, English is just a jumble of symbols that don’t seem to make sense.  The letters are not reliable.  The letters sometimes have different sounds based on……what?  It’s very confusing for many people, but particularly someone with dyslexia.  Concrete concepts in reading and spelling are something that don’t come natural to a dyslexic, and their brain isn’t wired for this.  Rules need to be taught in a very systematic, concrete, repetitive way with a lot of guided practice.  You actually need to rewire the brain and train it to accept the concrete rules.

Try reading with a young dyslexic child.  When #2 was in first grade he would pick up the book Go, Dog, Go! during his read aloud time after school.  He would look at the picture, put his finger under the words and say,  “The two dogs rode their scooters toward each other and waved hello.  They were happy because they had on very interesting hats.  The big dog took the feather and that was OK.”  Here is the page:

Go, Dog, Go!

The letters and words didn’t matter, he knew there was a rule about getting the clue from the picture and that has something to do with these letters on the page.  Because the letters made no sense, he would give his best guess.  This reading strategy, when in absence of any phonics skills, doesn’t get a reader very far.

Imagine how exhausting it would be if you were asked to read and write for much of the day and you could only guess, hope for the best, and pray you weren’t absolutely humiliated at some point when you are asked to read aloud or write something.  Guessing wouldn’t get you very far and would be incredibly frustrating if everyone around you seems to know some secret code and you don’t.  Until I started teaching #2 with the Wilson Reading System I had always been confused by spelling and syllables and phonics.  Very quickly I realized how easy it is to spell when you understand there are concrete rules for spelling and syllable division.  Closed syllables, open syllables, vowel-consonant-e, etc.  Rules when there are double letters.  Rules when there is a schwa sound (a vowel that has an unexpected sound).  Rules for exactly where one syllable ends and the next one begins.  I had gone through my life thinking everyone was constantly guessing at this confusing thing called spelling and I just had a real knack for constantly guessing wrong….little did I know there was a concrete system!  Guessing is no way to go through life.

Dyslexics innately rely on higher level thinking skills to understand the world, not concrete rules.  Dyslexics can take a lot of random ideas and put them all together in one thought must faster and easier than a non-dyslexic (such as talking about the weather, running, phonics, reading, spelling and a little life history all in one thought. If you don’t at all understand this post…perhaps its because you aren’t dyslexic!)  Phonics, spelling and multiplication tables are concrete and systematic.  At first these rules are seemingly random to a dyslexic and must be memorized with repeated practice….lots and lots of practice.  Spelling and reading need to be taught with concrete rules where the students divide words into syllables, label the syllable type, mark vowels, locate blends and digraphs, and ultimately read or spell the word.

marking words

After these skills are practiced over and over with a teacher reminding the student of the steps the student slowly gains automaticity.  Automaticity is when you don’t need to constantly think of the rules.  The goal is for a dyslexic child to eventually write the word “dependable” without needing to go through all the concrete steps each time:

  1. How many syllables are in the word? 3
  2. Is there a suffix? Yes. I’ve memorized suffixes and I hear -able
  3. What is the base word?  depend
  4. Ok, spell the base word first.  Remember the suffix at the end of the baseword steps.
  5. What is the first syllable? de
  6. What kind of syllable is it? Let me think.
  7. I know its an open syllable because I hear a long vowel sound at the end and its not closed in by a consonant.
  8. How many sounds are in the first syllable? /d/ and long e.
  9. Now I’m going to write the first syllable.
  10. Stop…there is a /d/ sound.  Every time I hear that sound I need to think….donut door.  OK, I know how to write that.
  11. What was I doing? (working memory getting overloaded)
  12. Oh yes, the first syllable….what was the word? Oh yeah, dependable.
  13. Write the d…..e….because its an open syllable.
  14. And, the next syllable…..what was the word? Dependable.
  15. OK, second syllable. pend.  I know its pend because “able” is at the end and that’s a suffix.  Remember, only the base.
  16. spell base word first, then add the suffix.
  17. second syllable.  Its closed.  I heard a blend.  how many sounds. write the sounds.
  18. p….e…..n…..STOP!!!! WHICH WAY DO I MAKE THE D???? DONUT DOOR!!! OK, ……d.
  19. I’ve got the base.  Now the suffix.  able.  that was the one with the schwa sound that I had to memorize….its spelled a…b…l….e.
  20. OK, finally I have one word down….dependable.

Made it!  (Now try writing a paragraph!)  With constant guided practice, eventually a person with dyslexia can look at the word and read it quickly (reading fluency) and write the word automatically.  Gaining automaticity is vital to reading enjoyment, reading to learn and written expression.  Without it, the student will go back to guessing because, in a sense, that is infinitely easier than constantly remembering all the steps for each word you face.  With automaticity, working memory is not overloaded, the deep meaning of text can be appreciated and reading and writing become enjoyable and not a slog.  The student is confident they KNOW what the word is, there is no more guessing, they understand the concrete rules of language.

marathon

The goal is to be sure of your footing and run as fast as you can down the concrete, covering as much ground as you can….and loving every minute of it.