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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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.