Beginning the dyslexia journey with our youngest child

We had suspicions since preschool that our youngest, Ellie, might have some reading challenges.  She was in Montessori preschools in both DC and Northern California and when most of the other kids were already reading, she was still struggling to learn her letters.  Her amazing preschool teachers were aware of it and were doing everything they could to help her. We all knew it was too early to make assumptions but we all suspected something was going on.

Same story in Kindergarten.  Her teacher was great and she got pulled out for extra reading instruction but she still wasn’t reading by the end of the year.  She’s our third kid and we’ve seen all three of our kids learn to read on different timelines but we were aware that there might be something else going on with Ellie.  

The summer after Kindergarten she was “invited” by the district to attend summer school.  Her two older siblings had never attended summer school so to ease the sting of it, we told her she was going to “Reading Camp” at her school.   Our lie was uncovered on the first day when the teacher said, “Welcome to Summer School”. Needless to say, she wasn’t real thrilled to go after that and it was more of the same, which wasn’t working, so it ended up just being 6 weeks of free daycare for us and more frustration for Ellie.  

During the fall of this past school year, her first grade year, Ellie still wasn’t reading.  She had the same incredible first grade teacher that our other daughter had so we knew and trusted her.  At the fall parent/teacher meeting, when we expressed concerns that reading wasn’t clicking yet for Ellie, she suggested we wait until after the holidays and after her 7th birthday to see if she started reading.  Apparently many kids come back to school after the holidays reading and 7 is a magic age for testing in public school.

Ellie still wasn’t reading after the holidays so we requested a meeting with the student support team to try to figure out what was happening so we could figure out how to help her and if she needed an IEP (Individualized Education Program).   The process was smooth but it took a few months to get a meeting on the calendar. When the team came together for the meeting, everyone was collaborative and they asked a lot of questions about her likes and dislikes, how she is at home, what we have noticed about reading issues etc.  We pushed for testing and another meeting by end of school year. We felt strongly that we wanted information before the summer break so we could make decisions to help her as soon as possible.

One thing that kept coming up during this time was her visual processing issues.  At our spring parent/teacher conference, we discussed the possibility of dyslexia, although we were still waiting for the testing results, and her teacher mentioned that dyslexia isn’t always just swapping letters, which is what I thought and I think a lot of people do too, but sometimes words move on the page.  Right after that meeting my wife asked Ellie if the words were moving left to right and she said, “No, they move up and down”. Wow! If the words were moving across the page, I certainly couldn’t read either.

We had multiple eye appointments and the diagnoses were any where from “she’s almost blind” to “she’s got 20/20 eyesite”.  When the school nurse tested her, Ellie said, “If you could just stop moving the page, I could read it”. Of course, the nurse wasn’t moving the page.  It seemed like different days or eye doctors produced different eye test results.

Layered on top of the reading/eye issues, she was also having stomach issues.  She had been potty trained since she was three but was now having accidents at least once a day.  Luckily the school was wonderful about it as they knew she was going through a lot with the reading issues and would just call when we needed to bring her new clothes or pick her up for the day.  She ended up missing a lot of school this last semester because of her stomach issues, which was another stresser on all of us.

To add insult to injury, she and her best friend had a falling out in March and she struggled socially through the rest of the school year.  The poor kid just couldn’t get a break.

At one point, she told me she was spending recess walking around with the recess monitors, who are adults.  That made me so sad.

And most of this time she had a smile on her face doing her favorite things (riding her bike, swimming, making slime, playing with our golden retriever etc.) and you would never know there were all of these issues going on unless you knew her well.  

The student support team was able to complete the testing and we had her meeting the last week of school.  I was surprised by the amount of testing that they had done. The team was collaborative, supportive, offered lots of services, which was not what a lot of other people seem to have experienced.  They concluded that she has dyslexia with visual processing issues (which isn’t that she can’t see but how her mind processes what she sees).

I was actually surprised by all of the services that they were offering (2 speech sessions a week, pull out 4 times a week to work on dyslexic specific curriculum etc) and all of the accommodations (preferred seating, extra time on tests, printing everything in 33 or larger font, a special ed teacher to consult with the classroom teacher periodically etc).   

She had scored very high on the IQ test so they said that the big discrepancy between her IQ and her performance is one reason that they were providing so many services.  We realized after talking to a few folks and reviewing her handwriting that we should also get her tested for dysgraphia (that was a new word for me but it’s basically for people who have a hard time writing) and so we got them to add that as another test they will do in the fall.  

About a month before the IEP and the dyslexia diagnosis, my wife and I had started to discuss whether the public school curriculum is the right fit for Ellie.  We are both products of public school, are public school advocates and live in a town with great public schools so it felt almost sacrilegious to look at private schools but we wanted to see what was out there.  We found a small progressive school that is inquiry based with a strong emphasis on outdoor education and arts.  We met with them and really liked their philosophies and the fact that they really focus on community, connection and self confidence.  We felt a bit like the public school was focusing on fixing her deficits where this private school would be focusing on her strengths. Of course, the private school comes with a price tag and the extra cost of private services so we have to factor that in too.

It’s been a little over a week since her diagnosis and I feel like my world has completely changed but I also have a sense of relief at having an answer.  We (I’m using the royal we as my wife has been amazing and taken the lead on this) have been asking advice from everyone we can think of: her public school principal, her old Montessori head of school, our friends, friends of friends, a private psychologist, the private school staff and even put a note on our town’s parent Facebook group about what experience others have with kids on an IEP in our public school district.

We have learned new terms such as twice exceptional (kids who are gifted but have a learning disability), phonemic awareness (noticing individual sounds in words), IEP (Individualized Education Program) and SST (student support team).  We are learning different dyslexia teaching and schools of thought such as Orton Gillingham, Lindamood-Bell, Slingerland and reading about dyslexia curriculum such as Wilson and Time4Learning.

My favorite feedback we got was from a friend whose daughter was diagnosed with dyslexia a few years ago.  Her response when we reached out to her was something to the effect of “Congrats on learning that Ellie has dyslexia.  She will learn early on how to handle challenges and navigate adversity in life and hopefully she will discover she has special gifts”.

I sincerely think she does have special gifts and part of our job as parents is to help her discover what her special gifts are.  We have been talking to Ellie about how we know reading is “tricky” (a word the psychologist used and we co-opted) but that she is really smart and we are there to help her figure this out.  

We have realized that the list of dyslexics is a who’s who of amazing people: Albert Einstein, Leonardi DaVinci, Pablo Picasso, Steven Spielberg, Richard Bransom, The Fonz and the list goes on and on.  My current thinking is that there might be something to be said about having to work harder than others from a young age so that the thought of doing something challenging or creating something great when you are older seems possible.

What I don’t know yet is what decision we will make on public versus private but I’m feeling more empowered now that we had a specific diagnosis.  We have two great options and I think Ellie will be successful on either path with the support she will receive from us and at either place. I also know that there is rarely one right answer to anything and we can change our decisions in the future.  We finally have an answer to a question that has been lingering for several years and there is a lot of research and resources out there to help us navigate this with her.

What I do know with 100% certainty is that we will do whatever we can to provide services, support, love and confidence building for Ellie to make sure she knows that she is not alone on this life-long journey with dyslexia.

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