Our Journey with Dyslexia

Tomorrow I am venturing to a legislative hearing for HF 2529 with #1, #2 and #3.  This is a bill which would give families with a dyslexic child a $2,000 reimbursement for tutoring costs or assessment costs.  The bill also gives teachers a $1,000 tax credit for training in a research based method to help teach dyslexic students.  This is a wonderful first step to help families and teachers enable their dyslexic children to reach their potential and alleviate some of the stress involved with dyslexia.  Below is my story I am sharing with members of the committee.  If you have a story, I encourage you to send it to your legislator, no matter what state you are in.  The theme during Lent at our church is “Hold on Tight to Love and Justice.”  One good way for my family to do this is to put ourselves out there and be witnesses for our struggle and the struggle of other children with dyslexia.  We are open with what is hard in hope it can make a difference for the future and that people who are going through a similar challenge can feel less isolated.

 family-64-2    family-54-2-2    family-28-2

            Our story with dyslexia starts when my middle son was in kindergarten.  He is a gifted child, but after preschool, many hours of being read to, and an excellent kindergarten teacher, he could not name most letters in the alphabet, let alone their sounds.  His anxiety was through the roof, in kindergarten.  It was a daily struggle to get him to school.

            In first grade things only got worse.  He qualified for the gifted and talented school in our district and we sent him there because his older brother was at the school and we had built a strong community of friends there.  First grade was a disaster.  I was constantly told that one day he would suddenly start reading, I just needed to keep reading to him at home.  I saw a child that was turning into a puddle, getting further and further behind his peers in every subject by the day.  I continually asked for help, yet no help came.

            Meanwhile my oldest child was at the same school in third grade.  He could barely read.  Again, I was told that some day he would magically start to read, though he was not getting any help towards this goal.  As the shift from “learning to read” to “reading to learn” happened during the second half of the year, the bottom fell out.  I brought my concerns to his teacher over and over again, but she felt there was no reason to worry or do anything different.  His writing notebooks were blank, he couldn’t read a book to complete a non-fiction report, yet I was told the school would not and could not help.

            The next school year was no different.  I had two children who could barely read, and who avoided writing because they had no idea how to do it.  They were light years behind their peers and they knew it.  Both of them hated going to school.  Again and again I asked for help at the school.  None came.

            Finally, when they were in 3rd and 5th grade we had scraped together enough money to have them tested.  We are not a family with a lot of extra money, and having our children privately tested is a sacrifice.  My middle son was diagnosed with profound dyslexia.  My oldest son was diagnosed with a mild form of dyslexia.  I felt like I had the golden ticket!  A diagnosis! Our money had been well spent.  The outside assessment had a couple pages of educational suggestions to help my children learn to read, which in turn would help relieve their deepening problems with anxiety and depression.

            The school, however, was not equipped to help my children.  The special education teacher had not been trained in educating children with dyslexia.  She did not have access to a reading curriculum that is research based for teaching my children how to read.  My older son started going to the reading specialist at the school.  But he was in a large group, for a very short period of time, and this teacher was not trained in helping children with dyslexia.  The special education and the reading specialist intervention were not effective and another dead-end.

            I ended up pulling my middle child out of school in the middle of his 3rd grade year when his mental health was reaching a very serious stage.  School was no longer an option for him.  I shut down my life and homeschooled him for 3rd and 4th grade.  I am a former 1st grade teacher and have also worked in special education so I felt equipped to do this.  Additionally, I went to training sessions at Groves Academy and bought the same curriculum Groves uses to teach reading.  I am proud to say that I was able to teach my middle child how to read and write and he is now at a small charter school.  Because he is doing so well he was recently removed from special education.  Success can happen with the correct teaching methods.

            My oldest child is now at a different charter school and in 7th grade.  After a disastrous 5th grade year, where his anxiety had become a very big problem, I pulled him out of his public school.  I had begged for help for him for 5 years at the school and witnessed him turn from a confident child with a deep love of learning to a child filled with anxiety and a dread of school.  When I asked continually for help in teaching him to read the principal finally told me that they could not help and I would need to hire a tutor 4-5 times a week and also find a good counselor to help him with his anxiety.  This is when I decided to find a different school.  We can’t afford that much tutoring (and for 3 children!).  He still struggles with reading and writing because he was never taught with correct methods in elementary school.  His standardized test scores are very low in reading and this will be a lifelong struggle for him.  However, he is starting to get his confidence back at his new school because they have made reading and writing a much more concrete skills for him to work on.

            I now have a 1st grader at a public school in St. Paul.  This fall we again got the money together to have his assessed privately when the school was failing to act.  He was also diagnosed with dyslexia.  Thus far, however, the school has refused to test him to see if he qualifies for special education because he hasn’t failed enough yet.  There are no reading specialists at his school.  So, his classroom teacher was handed a curriculum that she has never seen before and has no training in and told to do interventions.  For a student like my son, he needs 40 minutes of 1:1 teaching with a multi-sensory curriculum (Orton-Gillingham based) with a trained teacher, something that is impossible for any classroom teacher to accomplish.  Again, it seems tutoring is the only option for teaching one of my children how to read.  This is not a financial option for my family; so again, I am the tutor for my child, squeezing in time wherever I can find it.

            Life at home should not be about spending all your time doing the things that are hardest for you.  I try to also provide them time to pursue music, play sports, be outside, attend church, help around the house, and play.  School should be where a child learns to read and write, with support from home, but a parent should not do the main teaching or be forced to find a tutor who will.  We pay our taxes and support public schools as much as we can, but the schools fail to educate my 3 boys in the basics of reading and writing because their brains function differently than most people.  They are dyslexic.  They need a different reading curriculum.  With correct methods they can become successful readers.  My middle son is proof of that.  Children with dyslexia should not be continually told that public school is not for them and if they want to read they need to look to tutors, homeschool or expensive private schools.  Growing up with dyslexia is hard enough; being left out of an education only makes it harder.


Small Steps

This is my second winter attempting to skate ski.  Each time I head out to the trails I filled with anticipation, excitement and an ample amount of dread.  Last weekend I was out on a local golf coarse skate skiing with #1.  For awhile he was behind me and I would randomly hear (I’m sure there was some reason for it….but to me it was random) commands such as:

“Mommy, V1!”


“I said V2!”

“V2 Alternate!!!! Mommy….are you listening?  V2 Alternate!”

Quickly #1 became frustrated with me and I heard him coming up to my side.  He looked at me and mutters, “Do you realize that you are supposed to put your poles down at a specific time and not just randomly?”  He then takes off fast enough to insure I do not catch up to him.  Mothers are already really embarrassing when you are a 7th grader…they are infinitely more embarrassing when your mother is clueless and flailing on skis…in public…with other people around…that you know.


#1 showing some speed around a curve.

When I’m out on my skate skis I’m literally just trying to continue some sort of forward momentum, making sure my poles don’t actually hit my skis, praying I don’t have a heart attack, and wondering what crazy person invented a sport where you are supposed to glide up a hill on long slippery sticks.  Trying to figure out what my poles are supposed to do based on the terrain and speed completely overwhelms me.  I have enough things in my life that frustrate and challenge me, why am I taking on a sport that is so frustrating and challenging?


This is me….struggling up a teeny-tiny slope, I can’t even call it a hill.  
(It’s OK if you laugh at the horrible form.  It’s truly awful.)

This week Gabrielle Giffords had an inspiring editorial in the New York Times, “The Lessons of Physical Therapy.”

In it she write, “It’s gritty, painful, frustrating work, every day. Rehab is endlessly repetitive. And it’s never easy, because once you’ve mastered some movement or action or word, no matter how small, you move on to the next. You never rest.”

This is how I feel so often raising three children with dyslexia.  The moment I feel like one child is on the right track I turn my head and realize that another child needs more support.  When I spend time advocating at one school, I realize I haven’t talked to the teachers at another school enough.  If they aren’t struggling on a writing assignment, there is a large history project, or a science fair project, or a book report, or a spelling list….   When I feel like I’ve made some progress with advocating for #3, I realize just how much more I have to overcome in order to get him the help he deserves. When one small thing is mastered by one child, I don’t get a break, I move on to the next challenge without a pause.

It’s overwhelming.  It’s daunting. It makes me want to crawl back into bed.

However, Gabbie Giffords goes on to talk about how her resolve to achieve great things with her physical therapy are a bit like her resolve to achieve great things with gun control.  She writes:

“Our fight is a lot more like my rehab. Every day, we must wake up resolved and determined. We’ll pay attention to the details; look for opportunities for progress, even when the pace is slow. Some progress may seem small, and we might wonder if the impact is enough, when the need is so urgent.

But every day we will recruit a few more allies, talk to a few more elected officials, convince a few more voters. Some days the steps will come easily; we’ll feel the wind at our backs. Other times our knees will buckle. We’ll tire of the burden. I know this feeling. But we’ll persist.”

Do a little more each day.  Wake up determined.  I love this.  It can be applied to so many challenges we face in life.

When raising children with dyslexia it’s very easy to get bogged down and overwhelmed by the big picture.  There are so many roadblocks to success.  Schools don’t help.  Teachers aren’t trained.  Administrators are overwhelmed with other problems.  There is no funding. Blah, blah, blah.

I can’t solve all the problems surrounding educating dyslexic children in one day.  But I can do something each day to make a difference in the lives of my children and hopefully make the path easier for others in the process.  In 2014 I’m resolving to do 1 thing each day to learn more, advocate, or help someone effected by dyslexia.  Before I know it, if I continue to work hard, and continue to gain allies, there will be enough change that it has made a difference in the lives of children with dyslexia.

And in the meantime, I’ll focus on being able to skate ski without my knees knocking together.  The poles…and all that V-something stuff…will need to wait.

Happy Dyslexia Awareness Month!


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