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.

family-34-2

 

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What do I do if my child is struggling with reading?

Hope you win the lottery.  Seriously.

First, I’m so sorry.  It’s painful.  It’s difficult to have your child’s independent reading sheet look like this.

blank reading sheet

You begin to wonder what you did wrong and what more you should have done.  Listening to others talk about how their kindergartener is reading and equating that to intelligence or fantastic parenting or how often they brought their child to the library can be heart wrenching , especially when you thought your child was kinda smart, you were and OK parent and you have enough library fines to prove you do in fact visit libraries.  You wonder what is wrong with your child that should be on the road to reading, but for some reason is just not getting it.  The child that you thought was so normal in preschool is suddenly struggling and you feel like you are in the middle of an incredibly slow moving train wreck.

As the parent of this child, you need to find some resources and educate yourself about what dyslexia is and what it isn’t.

The International Dyslexia Association defines dyslexia as:

It is characterized by difficulties with accurate and / or fluent word recognition and by poor spelling and decoding abilities. These difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction. Secondary consequences may include problems in reading comprehension and reduced reading experience that can impede growth of vocabulary and background knowledge.

Studies show that individuals with dyslexia process information in a different area of the brain than do non-dyslexics.

Many people who are dyslexic are of average to above average intelligence.

A great book is Overcoming Dyslexia.  But beware, if you are like me you can read a book on ANY SUBJECT and start diagnosing yourself, your children and especially…your spouse.  A related website is the Yale Center for Dyslexia and Creativity.  There is a lot of great information here about interventions and advocacy.

Your first resource should be your child’s teacher.  If you have a good relationship with him/her and you trust them, be very honest and share your worries, observations and fears.  Everyone learns to read at different times.  If you child is behind, but making progress, its possible they are just a late bloomer.  But, if interventions have already been tried, no progress is being made, and there are no other reasons why reading should be struggle then its time to look for help.

Another good resource is your pediatrician.  These people see a WIDE range of children and many times have a good feel for when to worry and when not to worry.  Many times doctors have a good educational psychologist they can recommend if this is the direction you should go.

If you live in the Twin Cities, I suggest people contact Groves Academy.  It’s very expensive, but you can trust they are going to do a very thorough job assessing the strengths and weaknesses of your child and helping you come up with a plan.  I believe that going to an educational psychologist is very important for learning disabilities.  Sometimes a neuropsychologist or something who works more in a hospital setting doesn’t have the educational background and they give a different battery of tests and someone with an education background.  #2 was tested twice within months of each other with VERY different results.  The difference came with the educational psychologist giving him a phonemic awareness test, whereas the neuropsychologist left that out.  Without a test on phonemic awareness there is no way to diagnose dyslexia, since this is one of the telltale signs.  Sadly, if you rely on the school district, many times the help your child needs can take months or even years.  Of course, you will still need to go through the school district to get direct help from them, but if you already have an assessment in your hands from an outside source, many times teachers will use this information for accomadations, interventions and to move a 504 or IEP forward.

While all this is going on, continue reading out loud to your child and/or have them listen to books.  There are many ways to read, and reading with your eyes is just one way to enjoy books.  Listening is another great way.  The important thing is that your child views books as something enjoyable and something “for them.”

Another word of advice, find support, especially from other parents who understand the pain of having a child that struggles in school.  Having a child that struggles can be very isolating.  It’s really easy to feel judged, because, let’s be honest, there is a lot of stigma that goes along with having a child that is struggling in school.  If you can’t find someone near you, keep checking back with this blog!  One of my goals about being so open with my journey is to help other parents know they are not alone.

Last word of advice….go for a run.

 

Questioning Summer

It’s July.  Summer is in full swing.  In July is when my marathon training really kicks in for the Twin Cities Marathon.  Soon I will be breathing a sigh of relief when I “only” run 15 miles early on a Saturday morning.  This is the third summer I have trained for the TCM.  I have yet to make it through an entire summer without some sort of major injury that sidelines me for months.  So far this summer, I am still feeling good.  The past 9 months I ran 3-4 times a week pretty consistently and found two new sports that I love and wish I had more time to pursue, yoga and skate skiing.  Because of yoga and skiing, my body is stronger than its ever been which has helped me a lot so far this marathon season, yet I remain anxious about an injury.

When I am running alone my brain doesn’t stop thinking, “Is that an injury? Or that? What about that?” THE ENTIRE TIME.  When I’m not obsessing about every little tweak I feel turning into a major injury I’m thinking, “Can I actually run a marathon again? Can I run it faster? Perhaps I should not worry about the time.  Maybe I shouldn’t run the marathon.  If I think this 14 mile run is tough what am I going to do when its 26.2? Why am I doing this to myself? Who do I think I am? When did I decide I was a runner? Am I lying to myself?”  No wonder I get exhausted.

Last weekend I was out on a country road alone and wanted to get my long run over with because my brain wouldn’t turn off (see above), even when I started singing Beatles songs to myself.  I slipped into a long stride which allows me to run pretty fast with many less steps.  It only took about 5 minutes before I felt the scar tissue in my upper hamstring remind me that this stride doesn’t work for my body.  My brain immediately flooded back to September, 2011 and I could picture a particularly painful 10 mile run that good friends dragged me along on (at my request!) before I decided the marathon just wasn’t going to happen for me that year because of the severe pain. The memory of that injury is always looming and I can feel myself hold back because of the fear of re-injury.  When I’m alone, I can never truly run free and enjoy the meditation of running….I have too much fear of what is to come that continually cycles through my inner-monologue.

This sort of anxious-anticipation-while-doing-something-you-love must be how summer break feels for a profoundly dyslexic child.

All of my children are completely immersed in summer.  Sports, camps, swimming lessons, afternoons with friends, trips to the cabin, planning our summer vacation to Yellowstone, lazy days flipping through the Guinness Book of World Records for the one billionth time, playing Monopoly with your siblings and flipping the board across the room when you land on Boardwalk (and you don’t own it, but your big brother does, with hotel)…..  #1, #2 and #3 all worked very hard in school this year to overcome their many challenges and made great strides.  I thought I would do more academic work with them this summer, but I quickly discovered we all needed a break from phonics, handwriting, writing assignments, spelling and splitting words into syllables.

We have all been enjoying the break from syllable division and flashcards.

It’s possible to almos relax and forget how hard academic work is September-May….almost.  Dyslexia pops up nearly every day, sometimes when we least expect it.  The library reading program now requires children to write a book review, not just the name of the book.  Great idea, but not for my boys.  It takes them almost as long to write a short paragraph as it does for them to read the entire book.  None of us wanted to deal with the tears of forced writing assignments in the summer.  A camp counselor called to discuss #2’s journalling project during a week of nature/science camp.  #1 receives e-mails from friends and has a hard time responding without his mother to help with spelling.  #3 is asked to read and write something at his piano lesson.  Although dyslexia is not at the forefront of our lives in the summer and things are going pretty smooth, the anxiety and frustration are still there and I can see the anticipation on their faces when they are entering a new situation.

I’m continually wondering if I’m doing too much, or too little, or not the right approach, or the right approach but not enough of it, or too many camps, or too few, or the wrong camps, or enforcing reading too much, or perhaps not enough, and what about writing, and should we be doing math worksheets?  Exhausting.

Yesterday I stumbled across this article, Summer Fun, by Kyle Redford on the Yale Center for Dyslexia and Creativity site.  He writes:

“Balance is important to all children, but one could argue that it is particularly important when a child feels that his life has been hijacked by a learning disability.  The amount of time, energy and thought aimed at coping with dyslexia is significant. Since dyslexics spend nine months out of the year grappling with difficult school tasks that frequently lead to despair, summer is a relished opportunity to refuel and recharge.  Summer vacation is also an important time for a child to pursue activities that are fun and fulfilling, not frustrating.”

The article also has great tips about inspiring reading in your children during the summer that I was really happy to see we already do.  Listen to audiobooks! Listen to NPR!  Listen to RadioLab!!!!  We have been doing plenty of science this summer since #2 and I started a vegetable garden at the end of May and everyone has been pitching in to help.  #3 found milkweed in our yard this week and has been anxiously waiting for Monarch Butterflies to visit.  But the article also brought out my anxiety again.  Tutors? Special camps for dyslexic students? Academic remediation? Should I be focusing more on those flashcards and syllables this summer? Oh the doubt.  Where is that crystal ball I wish I could look in to see 10 years down the road and know if I’m doing the right thing.

Perhaps the summer is like the off-season of my running and the school year is the training.  Summer is the time to keep up with your skills without exhausting yourself.  Summer is the time to figure out new things you can do and feel good about.  Summer is the time to enjoy what you are good at, not to reinforce the things that are hard.

So, they will continue to work in the vegetable garden,

Megan in vegetable garden

see how far they can jump off a diving board,

Eddie jumping in pool

build their dreams,

Leonardo's Basement Rocket

experiment in the kitchen,

Leonardo's Basement Test Kitchen

and fish with their grandparents.

Fishing at Sand Lake

Near the end of the article it states, “Educating a child with dyslexia is a marathon, not a sprint.”

At least I’ve picked the right sport to carry me through this journey.

 One less thing to question.

Gaining Strength

We acquire the strength we have overcome. 

~Ralph Waldo Emerson

One year ago I was spending a lot of time sitting around rubbing ice on my ankle.  I didn’t know it yet, but I had a severe stress fracture that was 3/4 of the way through my ankle bone.  I had just run the Fargo 1/2 marathon, injured, and only made matters worse with more intense pounding.

It was time to change directions.  Speed should no longer be my goal.  It was time to learn from my mistakes and not add a lot of speed and a lot of distance, at the same time, to my running.  It was time for me to finally face the facts….if I’m going to be a distance runner, I need to gain strength, I can’t rely on willpower and stubbornness alone.

This time of the school year is always difficult for me.  It is filled with lots of anxiety…for me and for the kids.  We mourn having to leave a beloved teacher and move to the next grade, we have anxiety about what next year will look like and what will be difficult as academic demands become more intense.

It has been a great year academically and socially for all 4 children.  This is not something I have been able to say…..EVER.  #1 is at a new school and is getting his confidence back.  He has friends and he feels accepted for who he is instead of ridiculed.  He knows that certain things are hard for him, but once again he is willing to try.  #2 had a full year of homeschool and confidently tells people “I’m a really good reader.”  At times his classmates are retired ladies who are fellow dog walkers in the neighborhood.  They enjoy asking him what he is currently learning at school.  #3 finished year 2 of kindergarten (first year was 1/2 day, this past year was full day) and is wishing he could make “kindergarten student” his career choice.  Kindergarten is about curiosity and wonder, something #3 thrives on.  #4 is wrapping up preschool and will head off to Pre-K next year.  I am wrapping up 7 years of driving to our beloved preschool and feeling intense sadness and loss that in a couple days I will never again have a child at Dodge Nature Preschool.

A year ago life was so different.

A year ago I was sitting in the principal’s office pounding on a table asking, “Will someone in this school ever do something to help?” For 5 years I had been sounding alarms about #1’s struggles…and for 5 years I had been told not to worry.  Finally, at the end of May during 5th grade his classroom teacher listened to him (attempt) to read out loud and they tested him on his phonics skills.  The Friday afternoon before Memorial Day Weekend I received an e-mail from the reading specialist detailing the test results.  If I would have had a child in my 1st grade classroom with these results at the end of the year I would have frantically looked for interventions to help the child….that’s how bad the situation was.  At this moment I knew I was done with the school, but I agreed to meet with them one last time.

The next week I limped into my last meeting with the principal and various teachers at the school where I was told to put #1 in intense tutoring for the summer, and find a counselor for him to see a couple times a week because they were seeing signs of anxiety.  We would meet again in the fall.  They had no plan to change their instructional methods at school.

I don’t think so.

Their unwillingness to take responsibility for the education of my children had pushed me right over the edge and I needed to be done talking to them.  Walking out of that school I knew in my heart I would never return.  It was the place where I had volunteered and formed friendships with other parents for 5 years. The school failed to educate two of my children and the administrators didn’t seem to have one bit of remorse, just a lot of excuses.  I had spent the year fighting with the principal, first about #2 and now about #1.  I am a person who does not like conflict and fights.  Conflict makes my insides churn and keeps me awake at night, and I had spent an entire school year in conflict.  I was feeling incredibly betrayed, angered and hurt.  I was broken….physically (my ankle), emotionally and mentally.

It was time to pick myself up and get strong.

I promised #1 I would find a new path for him.  We have.  I did not cancel his camps, which are also valuable experiences, to put him in tutoring.  I thought this would feel like a punishment for a very active child.  He spent the summer decompressing and doing things he enjoys and reading some easy books.  A year ago I had a 5th grader crying, “Don’t make me go to school.  I hate it there.”  Now I have a 6th grader who is sad the school year is ending because he has loved it so much.  He has worked tremendously hard this year, and reading and writing are still difficult, but he feels understood and valued.

I spent the summer doing yoga, going to physical therapy and pushing my cardio skills in a spinning class.  With very little actual running during the summer, I was able to run the marathon in October.  This winter I learned how to skate ski and pushed myself more in the yoga studio, along with running over the ice and snow.  My entire body is stronger, and because of that, so is my spirit.

Although next year may be tough, we are ready.  Our injuries have made us stronger.

Did you have to battle to get a diagnosis?

Yes and no.  It was a very VERY V-E-R-Y long journey.  As I said in the previous post we had known something was going on with #2 when he was in preschool.  I spent 4 years trying to figure out why he was having such a difficult time in so many areas of his life.  He had a kindergarten teacher that I love and trust and she supported all of my concerns.  The kindergarten teacher said that red flags for a learning disability went off for her when she was working with a small group on letters.  Everyone was getting the letters and #2 was still stuck on learning one letter, just one!  Suddenly he put his head down and said, “This is perhaps the most exasperating thing I’ve ever encountered in my life.” His vocabulary was intact (although he had major articulation issues), letter identity was definitely not happening.

We went to the U of M for a test with the pediatric neuropsychology clinic the summer between 1st and 2nd grade (after an 8 month wait).  They tested him for 7 hours and 3 weeks later I received the results.  They put his IQ incredibly low and said he was having a hard time reading because he did not have the cognitive ability to read.  I was furious and heartbroken….not because I believed them, but because I didn’t.  We had wasted almost a year and I was starting to panic.

I had been reading Overcoming Dyslexia and was convinced he was dyslexic.  #2 fit all the signs of someone who is dyslexic.

Ian

According to The Yale Center for Dyslexia and Creativity the signs in kindergarten and first grade:

Reading

  • Reading errors that show no connection to the sounds of the letters on the page — will say “puppy” instead of the written word “dog” in an illustrated page with a dog shown
  • Does not understand that words come apart
  • Complains about how hard reading is, or “disappearing” when it is time to read
  • A history of reading problems in parents or siblings.
  • Speaking
  • Cannot sound out even simple words like cat, map, nap
  • Does no associate letters with sounds, such as the letter b with the “b” sound

Strengths

  • Curiosity
  • A great imagination
  • The ability to figure things out
  • Eager embrace of new ideas
  • Getting the gist of things
  • A good understanding of new concepts
  • Surprising maturity
  • A larger vocabulary for the age group
  • Enjoyment in solving puzzles
  • Talent at building models
  • Excellent comprehension of stories read or told to him

My pediatrician found an educational psychologist and she tested #2 a couple weeks later.  She spent about 4 hours with him and then gave him a phonics test.  She discovered he had absolutely NO phonemic awareness. After a couple more tests to figure out strengths, it was obvious to her that he was profoundly dyslexic.

Henry

With #1 we had also had questions for a long time.  He was a later talker, which is probably because he is dyslexic.  He didn’t read much until the end of second grade and by 4th grade he was far behind his peers in reading, although he had been given ever opportunity to be a good reader.  He avoided it at all cost.  And writing…..what writing?!?  His notebooks were blank.  Afew weeks after #2 was diagnosed we brought #1 to the same educational psychologist and he also had no phonemic awareness and showed many of the strengths of a dyslexic child.

Eddie

We have not gotten #3 tested.  He is in kindergarten.  And, while he struggles with all things having to do with letters, his personality is much different than our older two children.  Life is a party for #3.  He loves everything about school.  He is getting the support he needs at this point and I know how to support him at home (something I didn’t know much about 4+ years ago).  I don’t see any point in having him tested at this point (not to mention the obscene cost of the testing!).  Perhaps the time will come when we need a label to get more services, but at this point I’m just following the path of the party and enjoying watching him still be full of wonder and joy.

My advice to parents is always….trust your gut.  Don’t let teachers or other people say that the reading will come.  If you think there is a problem, start digging, and ask a lot of questions.  If a diagnosis doesn’t seem to fit the child you know, get a second opinion.