Complicating Factors

It was too hot.

It was too cold

I didn’t sleep enough.

I dressed too warm.

I started too cold.

I didn’t eat enough.

I ate too much.

I should have had a gel.

I definitely SHOULD NOT have had that gel.

The coarse was too hilly.

The coarse was too flat.

It seemed like we ran uphill, against the wind THE ENTIRE TIME.

There weren’t enough water stations.

I trained too much.

I didn’t train enough.

It’s the wrong time of the month.

I’m still slightly injured.

I injured myself 1/2 way through and gutted out the rest.

There are a lot of complicating factors to running races.  Conditions never seem to be perfect and a runner needs to adjust to the physical conditions around them.  Last spring my goal was to run a 1/2 marathon in 1:40 in order to get into corral 1 for the Twin Cities Marathon.  It didn’t happen.  There was always a complicating factor.  When I finally thought everything was working in my favor and I was going to run a very fast course I had run before….I injured myself.  It’s always something.

While #2 was being reassessed by the school district I had a complicating factor which caused me to not pay enough attention to the process.  My dad was going through a health crisis.  He was diagnosed with end stage heart failure that winter and had an LVAD implanted about a month later.  I was overwhelmed and felt pulled in two different directions.

The reason I share this information is not to gain sympathy, but to illustrate that there is always a complicating factor for families.  On paper I was the perfect parent to navigate the convoluted system of special education and get the best services for my child.  I did my college psychology research on learning disabilities, I worked in Special Ed., I was a 1st grade teacher, I felt comfortable with education jargon, I had a close and trusting relationship with the classroom teacher, I was a stay at home parent with flexibility to attend meetings, we had the ability to get an evaluation by a private professional, I had a strong support system of family and friends, etc.  However, I was also dealing with another stressful situation and that lead me to drop the ball on #2 for a couple months and trust that the school was doing their job.

It makes me sick to my stomach to think that other families are going through the same assessments and IEP meetings every day….well, the “lucky” children who’s learning disability is alarming enough.  Other children are just getting pushed aside and allowed to fall between the cracks (this was the tale of #1 before we moved him to a new school).  What about the children who don’t have parents as well versed in dyslexia?  What about the parents who are working 2-3 jobs to get food on the table?  What about the parents who don’t speak English?  Can’t afford an outside assessment?  Do not have a strong social support network? Have never heard the word dyslexia? Had a negative educational experience themselves so accepts when their child fails as normal?

This weekend the New York Times had a Piece “No Rich Child Left Behind.” While reading it I couldn’t help wondering what role dyslexia plays in the equation of the middle and lower class not performing as well in school as the upper class.  It is estimated that 5-10% of the population is dyslexic.  Many people believe 20% of the population is dyslexic. It does not affect 5-10% of affluent children who are able to afford outside tutoring and private schools, but 5-10% of the entire population.  Up to 10% of any classroom could be children with dyslexia, and our school district doesn’t recognize it and is not equipped to teach these children in the most efficient and effective way we know.  If a child requires a special method to learn, such as the Wilson Reading System, in my district you are told to figure that out yourself, even if your child qualifies for an IEP.  My district has one of the largest achievement gaps in the country.  Dyslexia is not the main reason for our achievement gap, but I do believe it is a complicating factor.  How many children out there are suffering with a learning disability and our schools are not equipped to help them?

My kids are fortunate.  They were born into a family with resources.  I have the knowledge, skill and financial ability (because of my husband’s job) to homeschool and tutor them individually with curriculum designed for children with dyslexia.  This is not most people’s reality.  Our situation is still difficult and we are stretched very thin at times, just like many families.  We are not an affluent family, but we are definitely not poor.  We have material and non-material resources and I was still unable to muster the energy to navigate through the educational system and figure out how to get help for #1 and #2 so they could learn and have the confidence to face dyslexia.

Our society needs to start recognizing dyslexia and do a better job of teaching these children.  We can do something about this.  It will always be a complicating factor, but it shouldn’t be the reason children fail.

For children with dyslexia, it’s time to

slow down,

get better form,

rethink the goals,

practice,

become stronger,

believe in yourself,

and get back on track…..

just like injured runner.

Imagine the possibilities if we could help children with dyslexia before they failed.

All children deserve the chance to soar.

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Kindle

If your child is having difficulty with reading, and you can afford it, get a Kindle, or other e-reader.

Not only will your child become more engaged and motivated with their new gadget, but with the Kindle you can make the font bigger and spacing between lines wider. This change makes complicated text (usually with a smaller font) look more like a beginning chapter book.  By changing the size of the font, it is easier for the reader to track the words, aiding with reading fluency.  (There is a reason those easy readers have a large font and fewer words on the page.)

Looking up vocabulary words is also instantaneously accomplished with a couple clicks.  If you want to see something laborious, ask a profoundly dyslexic student to find a word in a dictionary!  A deep vocabulary is one of the keys to reading comprehension.  Because of the ease, barriers are lifted and the child is no longer guessing about unknown words.

And it doesn’t hurt to be able to buy a book instantly.

What is the hardest part about homeschooling?

The answer to this varies.

In many circumstances I am searching for concrete.  To me, there is nothing concrete about homeschooling.  Before #1 was born I was a classroom teacher.  There were a lot of rules that I had to live by and I knew my role.  I had my classroom at the end of the hall where I taught 1st grade. The curriculum, standards, and schedule were dictated to me.  Not all bad.  With homeschooling, for better or worse, I’m the superintendent, principal, teacher, cook, janitor, secretary, community liaison and the parent.  No one is telling me what units I must do, or what due dates there are.  There are no set school hours or calendar.  There are no tests.  No report cards.  No conferences.  No one else in charge of his learning.  I don’t have any idea how many months or years I will be doing this.  These are all good things for the type of learner #2 is, and I am fortunate to have the opportunity to help him in this way. I enjoy the challenge, but it’s sometimes very hard for me to live with the chaos.

Life is still happening.  The house gets continually used (trashed).  #4 is home much of the time doing what preschoolers do, moving things around.  Last year #3 was home too and they moved throughout the house like a pack of wolves just waiting for an opportunity to deconstruct something.  If I had a job in which I left during the day I think it would be a matter of “out of sight, out of mind.”  However, I sit by #2’s side at the dining room table for most of the day with the knowledge that if I turn my head the house looks like this:

and…..

and….

and get ready…..

AHHHHHHHH!!!!

In response, I make my bed every day.

When the day is particulary chaotic, at least there is this.

And you better believe there are crisp hospital corners.

The emotional answer to the question is that it’s hard not being able to spend the time with #4 that I spent with the 3 boys when they were little.  Again, if she was out of the house, it would be different.  However, she roams for much of the day, stealthily flying under the radar.  She is independent, happy and easy-going.  She seems to understand that her brother needs my attention and she doesn’t.  Her preschool teachers said they think #4 should go around with a banner that reads:

“Live and let live.”

Perhaps I have found the principal for my homeschool.

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.

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:

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.

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.

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.

Pencils

On Fridays I hope to have a very brief post with a quick tip that I’ve discovered.  Today….pencils.

#2 was also diagnosed with dysgraphia, which is a difficult with writing.  At the beginning of 3rd grade just making letters was still quite difficult.  I discovered these big pencils at Target and Lakeshore Learning Store.

I’m sure there is some science behind why writing became easier with these bigger pencils, but sometimes I just go with it and move on.  If your child is having a hard time with letter formation and writing endurance, try them!

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.

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.

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.

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.

How old were your children when they were diagnosed?

I’ve been getting a lot of questions from people through e-mail and Facebook.  I’ll try to do my best to answer them.  Thanks for asking your questions.

#2 was our first child to be diagnosed because he is the most severe and we were desperate to figure out why he was struggling so profoundly.  He was diagnosed in 2nd grade.  Starting in preschool we knew that his learning style was outside the norm.  In kindergarten his teacher started documenting things she was observing.  The documentation continued in 1st grade and by the beginning of 2nd grade we had figured out he was dyslexic.

#1 was diagnosed 3 months later.  He was in 4th grade.  He was still struggling with reading and I was concerned that he had no skills for decoding a word he didn’t know while he was reading.  Because he had a brother with a diagnosis we had him tested.  Dyslexia is genetic.  If one sibling has it, the chance that another sibling has it is about 50%.

Running backwards

“Remember 5 days ago when I was so happy to be running in capris?” This is a text I sent one of my running partners last week.   Minnesota is enduring the return of winter.  Little did we know in December that getting through this winter would be its own form of an endurance event.  Each time I look out the window, it seems like we are in a time warp and have gone backwards in time.  We are stuck in February.

Sometimes my days with dyslexic children are like this.  Last week while #2 was writing I had to remind him that b is made “bat-ball” and d is “donut door.” I thought I was going to lose it.  Honestly. I usually sit by his side while he is writing and watch him make every letter so I can stop a mistake before it starts.  The more times he forgets which way a b goes and writes it backwards, thats twice as many times I have to remind him which way is correct.  Last year we sat with colorful reminders of trouble letter shapes in front of him.  This year we have tried to move towards cementing that knowledge and relying on kinesthetic reminders with his hands or verbal reminders.  This multisensory approach is incredibly important to dyslexic students when we are trying to make new imprints on their brain of what a b looks like.  Its stunning how much practice an intelligent child needs on such a basic skill. Someday I hope he gains automaticity in his letters (although there are many times that I also whisper “bat-ball” or “donut-door” when I’m writing).  #2 can discuss presidential history, but when it comes to writing I constantly feel like I’m going backwards or stuck in a time warp….Its always gloomy February.

Last fall I heard Andrew Solomon, author of Far from the Tree, speak.  His book is about parenting children with differences.  One part I really connected with is that the parents that seem to come out of difficult parenting situations to tell stories of success have found deep meaning in their parenting journey.  This is something I have found myself going back to as I look outside and wonder what month is it and then I look at #2s writing and wonder the same.  Am I making progress?  Is this worth it?

And yes, it is.  The patience and time it takes to help a child with profound dyslexia is worth it.  I don’t know the path it will take, but I’m determined to make it worth it.  There are bright spots with his language.  18 months ago he broke into tears if he was asked to read a book as simple as Go, Dog, Go!  Last week during free read time I looked over and found this:

There is hope.  Its amazing what discipline, practice, grit and perseverance can do.  It can turn a non-runner into a marathoner.  It can turn a non-reader into a voracious reader.  Lately its a small battle to get him to put DOWN a book, especially when its such high class literature as The Secret of the Fortune Wookiee: An Origami Yoda Book.

Today my text to a running parter will be, “Let’s try to qualify for Boston at the TC marathon this fall.”  We all need hope.

The sadness of a runner

“I am a runner.”  These are words I never thought I would utter.  Ever. Today despair struck at the biggest moment in the biggest event of my favorite sport.  At the finish line, after having run 26.2 miles, emotions completely take over a person.  The finish line is the place of jubilation, gratefulness, peace and overwhelming love of life. The Boston Marathon is seen as the reward to many runners after years of hard work and a fast qualifying time in a previous marathon.  This was not supposed to happen.  Running is a peaceful sport where people encourage and challenge each other to bring out their best efforts.

My heart breaks for everyone personally effected by the events in Boston today.  Runners put miles in together, we greet each other at 5:30 AM out on the trail, and runners stop to help others.  The image of athletes finishing the marathon and running to the hospital to give blood makes sense to me.  This is what people do.  People help each other.

“I am a homeschooler.”  These are words I never thought I would utter.  Ever.  I came to running positively, but I came to homeschooling very reluctantly. School should be a place where children feel safe.  Like a marathon, it should be a place of jubilation, gratefulness, support, achievement and love.  For #2, it was anything but this.  His experience was filled with anxiety, misunderstanding, low expectations, learned helplessness and tears.  It was not a safe place for him, rather a daily assault that would drain him every time he walked through the doors.  Many parents with children who fall outside the norm understand my feelings of frustration and sadness.  There were not enough helpers at school for #2…and the school didn’t understand what helpers #2 needed.  I could not let him continue to sit in school and watch his self-esteem and confidence melt to zero.  This was not supposed to happen.

Sadly our public schools are not set up to handle children with profound dyslexia, especially when it is accompanied by an anxious and sensitive personality.  In his book The Dyslexic Advantage, Brock Eide describes 4 personalities of people with dyslexia.  One personality is highly sensitive accompanied with high levels of anxiety.  At a recent conference at Groves Academy a parent asked Eide how a parent can help a child with this personality cope and learn in school. He responded that unless you are able to send your child to a school like Groves, your answer is to homeschool, there is no other option right now. This is not OK, although this is my reality at the moment.  We need more helpers in the schools in the form of teachers trained to understand and teach children with learning disabilities.  Many times these children are also gifted.  We must form a world where there are more helpers for our children to turn to.  Let’s imagine and put forth a world where children who struggle feel safe and parents no longer need to fight to get their children the education they deserve.