Our Journey with Dyslexia.

Written by Alex Louise
10.28.2021

I knew. I didn’t know what I knew but I knew something.

Other voices said: “He’s not remembering things other kids remember but it’s ok, he’ll catch up.” or “It’s the traveling and homeschooling – it’s hard and you are asking too much of him.” or “Don’t worry about it, it’s the two languages.” or “Just give him some more time – it’s because of your year away. He is just having a hard transition. Maybe you should put him back into 1st grade to make up what he missed?” or “He’s a boy – he just needs more time.” or “He just needs to work harder.” or “He’s too young to test. You have to wait until at least 5th grade.” or “It’s because he’s now in a class with really strong readers.” or “You just need to be more chill and not worry so much.” Though I understand why teachers and school administrators, family members and friends said what they said, their statements were not helpful, encouraging, useful or soothing in any way. In fact, I have never felt so alienated, discouraged, frustrated and alone.

It started with things like not remembering his birthday or the days of the week in kindergarten. He could weave the most magical imaginary tale of living in his made up sugar world and he asked questions about the universe and answered other questions in ways far beyond his age but spelling his name was a struggle. He could easily speak in German and English and effortlessly weave in between the two but numbers got switched and b was d and d was b. In the German kindergarten this was all still in the range of “normal” and so we let it be.

During our travel year which spanned what would have been his 1st grade year, we focused on teaching him in German. It is taught phonetically, with syllables and letter pairs that almost create images that you can see in the words. The building blocks of learning to read and write in German are intuitive and almost methodical – like legos that when put together turn into something. No silent e at the end of words. If you see a letter you pronounce it. No sight words, only lessons in how to break down words to their lowest common denominator and then learn to sound them out. Yes, German grammar becomes extremely complicated as you master the language but in my experience, the essential building blocks that are taught in the 1st grade are nothing short of magical. Believe me, I was learning how to read and write in German right along with him. We did what we could as we traveled – armed with textbooks and encouragement. In German, the letter “i” is said like the English letter “e”. Two common syllables are “ie” and “ei” which still give me trouble. Double digit numbers like 25 aren’t spoken twenty-five but five of twenty. Lots of inverting without having a learning challenge. Again, all normal in children learning two languages. He struggled, we got frustrated, we found new ways, he managed. Until we we introduced English site words so that he could transition into the 2nd grade upon our return home. That just didn’t work at all. We returned home, knowing we wanted him to start 2nd grade with his classmate but realizing the other students were lightyears ahead.

What unfolded next nobody could have planned for. What I know now about dyslexia and anxiety (click here for more info) helps explain the daily trauma and extreme anxiety responses, countless calls from the school, pediatrician and specialist appointments to find the cause of daily stomach aches, meeting after meeting with teachers and the school director and lots and lots of tears that overpowered the first 4 months of the 2nd grade. None of the suggestions or recommendations from the school offered any real change or solace. It all just seemed to make it worse. He had no disciplinary or behavioral challenges so the sentiment was just to give him some more time and for me to calm my nerves. I mean testing in 2nd grade is too early, right?

And then a woman/teacher/friend, for whom I will forever be grateful, pulled me aside one afternoon during the flurry of after-school pick-up to ask how it was all going. I probably had tears in my eyes and steam coming out of my ears. She said “Just get him tested. Trust me.”

And the reason I didn’t think twice about following her advice is because she had been in my shoes. Dedicated to dual language, connected to the community, supplementing an already long school day with private tutors and learning to be the mom to a child with dyslexia. I had watched her walk this path, I had watched her make the hard decision to change schools and I had observed the relief and joy in her face when she could report back that her daughter was and is thriving.

So I made one call. To an education specialist who came highly recommended. I sat down at her round table. She already had the Kleenex box ready. She had done this before. And I proceeded to unload all the experiences, the recommendations, the observations. She listened and then with the warmth and understanding of her years of experience she said “He sounds like a wonderful boy. He sounds bright and curious. He is lucky to have you as his mom. I believe your intuition. I will evaluate him and I will either tell you that he has something I can help him with or I will tell you that he just needs some more time right where he is. Either way, everything is going to work out.”

I almost jumped across the table and hugged her and I realized in that moment that education specialists like this woman exist to help the parents as much or even more than they help the kids. Then she said “Here is the plan. I want you to do three things. First, I want you to call this woman. She is the best and she’s in Mill Valley and she’ll tell you what Slingerland is and she’ll teach your son. She’ll get your son what he needs to get through school right now. Second, I want you to decide if you want to do a full neuro-psych evaluation or a simplified learning style assessment. I have my own hunch but you’ll need a result either way. And third, I want you to visit this school that recently moved to Mill Valley. It’s called North Bridge Academy.”

I mean she gave me a plan! I went from floundering to determined, knowing I had just found the person I needed most in our corner. I left her office knowing that I had just met one of those people who impact your life, more than they will ever know. Around Christmas 2019, we were still 100% committed to keeping our children at the German school. We’d find a way to get our son the support he needed. We had committed since kindergarten and the community and the language was not something we were ready to easily give up on. But after a few sessions with the Slingerland specialist, she suggested a dual language program was not the right thing for him right now. Then the educational testing came back with strong data to support a dyslexia diagnosis. Then I attended a prospective parent tea and found myself sharing intimate and tender moments with complete strangers who spoke to the transformational experience of their children finding their place in this school. Then we attended an open house and though we both kept rather silent during our visit to this school, as we walked out onto the sidewalk and started to walk home, we looked at each other and said “Well, they basically just described our kid 100%. I don’t think this gets any clearer than that. This is where he is supposed to be.” And so we applied, just under the deadline at the end of January 2020. In less than 3 weeks, we had just decided to completely derail everything about our life and our 5 year plan.

And then we waited. We figured out a mix of accommodations his teachers could try. We gave him a break on the English part of the school’s curriculum and asked the teachers to work with these early readers,
Primary Phonics Series, which support teaching English phonetically, which his English teacher had no idea how to do and even questioned. We stopped all homework and instead focused the after-school time for play and extra sessions with the Slingerland specialist who with every session began to build him up until we began to recognize his smiling face again.

And then, in March 2020, the world changed.

And amidst all that change and Zoom schooling, we received an acceptance letter. We had to make the decision to change a path we had chosen when our oldest had started kindergarten 5 years earlier. It was a path most thought was crazy. It was a path that had me driving over the Golden Gate Bridge 2x day. It was a path we were privileged to be able to take. The thing you learn with parenting is that you can make the best intentioned plans and then you just have to wait and see if your child is aligned with those plans. Sometimes they are, sometimes they aren’t. What complicates the matter is when what works for one child, is troublesome or in the very least impactful for the other. Choosing this new right school for our younger son, would mean impacting the school choice for the older one. It meant leaving the German school altogether. Giving up on the community, friendships, culture and curriculum of the German school was an unbelievably hard decision. It really felt like a loss.

But the loss was quickly transformed. Even with starting a new school on Zoom, the difference was immediate. He was happy to go to school again. He started to believe in himself again. And he quickly began to respond again with “Mom, I got this. I don’t need your help.” This is decision we would make over and over again.

Looking back to the time when our son was really in distress, right when we returned from our year of travel, something in me had to change. Perhaps moms are often called to be advocates for their children but this seemed like something more because it involved something I had never experienced myself. He was the only child in his class struggling and it was causing daily emotional and physical stress. His teachers were impacted, the other students were impacted, we were impacted. This is not a unique struggle – it’s happening in classrooms everyday all over the US. I happened to be lucky enough and have the privilege of time and availability to pay attention and get involved. This needed a different part of me than the part that made sure he got a turn on the swing when he was a toddler. Moms (and dads) of children with learning differences may become fierce advocates for their children because they have to.

I have learned in the process of becoming his advocate that:

• I had to trust my intuition that something was not right, even when voices of authority and expertise didn’t initially agree with me
• I had to trust my own observations
• I had to listen to all the signs (both verbal and non-verbal) that he was giving me
• I had to educate and learn about something I had never experienced before
• I had to learn how to act for him and on his behalf
• I had to learn to speak up and when speak to up
• I had to ask for help
• And now, I have to continue to connect with other parents (especially moms) who were experiencing the same things
• And now, I have to be honest about my feelings and my experiences. There is only stigma from misunderstanding or lack of understanding. The more we say what is so, the more the truth permeates into the crevices and gets to take up space.

Having a child diagnosed with dyslexia means being a mom to a child who may not thrive in standard or traditional classes, schools and ways of learning. Having a child with dyslexia means he/she/they are perhaps extremely bright but their performance in school does not reflect this. Having a child with dyslexia means watching your child struggle and knowing that you can always ease that struggle. Having a child with dyslexia means making sure they have opportunities that reflect their strengths back to them more than their struggles. Having a child with dyslexia means understanding that growth for them is totally not a straight line but a circuitous overlapping web of pathways and crossroads. Having a child with dyslexia means having a lot of patience when it comes to reading practice. Having a child with dyslexia means reading out loud to them even when other parents have stopped reading to their kids. Having a child with dyslexia means being ok with taking one step forward and 4 steps back. Having a child with dyslexia means embracing that left may always be right and vice versa. Having a child with dyslexia means knowing what deep exhaustion feels like. Having a child with dyslexia means finding out that John Lennon was also dyslexic. Having a child with dyslexia means getting really comfortable with frustration. Having a child with dyslexia means getting really good at reading time negotiation tactics. Having a child with dyslexia can mean magical stories and out-of-the-box problem solving and fanciful art projects. Having a child with dyslexia may mean having your heart break when you hear them say “I am dumb” or “I am stupid”. Having a child with dyslexia means celebrating when they get to say “Dyslexia is my superpower” and really mean it. Having a child with dyslexia means until he can be his own advocate, I get to be his.

I have learned in the last 2 years that testing for dyslexia can be done early and the earlier the diagnosis the less need for interventions to heal the self-doubt, the low self-esteem and the negative self-talk that often plagues students with undiagnosed dyslexia in their school experiences. I have learned that students with dyslexia don’t need to try harder, they need to try different. I have learned that there are other families who were (and are) struggling as much as we were. I have learned that understanding how students with dyslexia learn is integral in being able to teach them. I have learned that no amount of accommodations, extra tutoring or practice will help a student with dyslexia if you are not addressing how they learn differently. I have learned that this approach to teaching reading and writing would benefit a vast majority of students, not just students with dyslexia. I have learned that dyslexia really truly is a superpower.

For all my favorite online resources, Instagram communities and tools for dyslexics click on Dyslexia Resources.