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.

Advertisements