On the first night of Passover, my 9-year-old daughter Mimi, my wife, and I joined a public Seder (the Passover dinner) at a synagogue. Around 40 people gathered in a chatty atmosphere while the Rabbi welcomed everyone. Before jumping into the reading of the Haggadah, the Rabbi and his family organized a quick ice-breaker. They prepared a few written puns about Passover. “Who wants to read?” they asked. To my surprise, my daughter jumped up from her chair: “I want to read”!
My wife and I looked at each other worried and hopeful, at the same time. Mimi went next to the Rabbi and read the pun. She just slightly stumbled on the word Matzah. But the Rabbi was quick to catch that one. Guests laughed at her joke, and Mimi returned to her seat with a big smile. It was a heart-melting moment for us. Seeing our daughter empowered and joyfully embracing that moment was meaningful to all our efforts done in the past two years.
A couple of years earlier, when COVID hit the world, just like many other kids also Mimi attended part of her 1st and 2nd-grade classes via a tablet from home. It didn’t take long for us to notice she had some solid skills in some areas but was surprisingly struggling in others. Her difficulties went beyond the challenges you would expect from such an unusual learning scenario. Mimi is a brilliant and joyful kid; she has a strong sense of spatial 3D, out-of-the-box problem-solving ideas, artistic sensibility, and a pretty solid sense of humor. However, she struggled with language-related tasks, like memorizing sight words and math word problems. She hardly remembered people’s names, struggled with the concept of time, and learning to read was becoming an issue.
Mimi was receiving some support from her school and she was often pulled out from class. But her improvements in reading were minimal. The school told us it was just a matter of time, that kids one day just “click” and start reading fluently. Probably that’s what happens most of the time, but we didn’t think it was an assumption that justified not doing some research. Especially given the contrast between how brilliant Mimi was in some areas and how much she struggled in others. Every person is unique, but that was a bit too much, it didn’t make sense to us. So my wife and I began to ask ourselves what was going on. Was it because we speak Italian at home? Therefore, Mimi was confused at school? Was it because she needed additional support, and we never noticed? So we went through all our decision-making regarding her education and tried to find the causes.
When Mimi was in Early Childhood, she used to receive speech therapy. Together with her teachers, we noticed she was having trouble pronouncing some letters. Nothing was alarming; the support she was receiving seemed to work. Our constant communication with teachers allowed us to stay on top of the issue. We lived in the Seattle area, and Mimi attended a private school.
When we moved to the Chicago area, we enrolled Mimi in a public school in what we thought was one of the area’s best school districts. Probably of the US, actually. We asked the school if Mimi needed to continue with her speech therapy. They answered that it was unnecessary and commented, “but it wouldn’t hurt.” Well… Who spends an additional $600 per month and adds stress to a child just because “it doesn’t hurt”? So we trusted their thought and enrolled Mimi in their Kindergarten adding ESL (English as Second Language) as additional support. In the following years, the feedback we always received was excellent. “Mimi is doing great” “everybody loves her.” Awesome. A parent’s dream. The school minimized her challenges in reading; “It will click in” was the mantra we were told.
When COVID hit, the school had to close and switch to remote. During those months, my wife and I had the chance to see Mimi interact with her teacher and peers. The gap in reading with most of her peers was noticeable. And that gap created unnecessary difficulties for Mimi in almost every subject. Not to mention that it was fading the enthusiasm and curiosity that Mimi always had for learning and school.
We did some research and learned that some kids may benefit from multisensory structured learning. We read about the Orton Gillingham method as a first step. We then discovered an entire universe of possibilities for multisensory structured teaching. These are data-proofed and scientifically validated teaching methods for kids with Dyslexia. Dyslexia? OK. Let’s learn about Dyslexia then and see if Mimi has anything to do with it. Early intervention is the key to success with many issues, Dyslexia included.
I’m not qualified to write a definition of what Dyslexia is, but we read that Dyslexia is a learning difference that affects how language is processed in the brain. Interestingly, these differences also give the person incredible talents, often related to creativity, thinking outside the box, spatial intelligence, etc. We discovered and were somewhat comforted by the fact that some of the most impactful geniuses that changed the world and some very successful people were dyslexic: from Leonardo da Vinci, to Einstein, Steven Spielberg, Richard Branson, Walt Disney, etc. Surprisingly, we also learned that it is much more common than expected: approximately 2 people out of 10 have Dyslexia. We also became aware that kids with Dyslexia may overcome their challenges if language is taught in a way that works for their brain, like multisensory structured learning.
Research has shown that these methods, when applied to all kids (with or without Dyslexia), improve reading fluency across the board. So, we purchased the appropriate books and tried the multisensory approach at home during the summer, between her 1st and 2nd grade. It was actually working! Mimi started to improve her reading skills, and my wife and I weren’t even experts in the field!
We contacted her public school and enthusiastically shared the big news. “We want to help!” we said to them. “We think she might have Dyslexia, but we will leave this to you. Just let us know what she needs, and we will help you. If the school doesn’t have the resources, we can step in and pay some private tutors to help her”.
We reached out in August. In December, we were able to schedule the first meeting with a task force “ready to support Mimi.” The special education teacher had never had the chance to meet Mimi before. Challenging times, understandably. Still, the school presented an IEP (Individualized Education Plan) insisting it was adequate. One of the year-end goals was for Mimi to be able to complete additions using numbers up to 20. Ehm… Excuse me? We have a problem here. Mimi already knew how to do that. Her problem was not the math but how the test was presented to her. Our fear the school was going in a direction that was not in Mimi’s best interest began to grow.
We noticed embarrassed reactions from the school whenever we mentioned Dyslexia. The word Dyslexia was just not part of their vocabulary. When we asked to use specific methods proven to work with dyslexic kids, the attitude became dismissive. At the time, we obviously did not understand how the system worked. How naive my wife and I were! We thought we were having a conversation about Mimi, and it took us months to understand a broader scenario. It seems that state law (at least in Illinois) obliges public schools to provide the particular service the child needs at their expense. And for this to happen, the specific need requires to be diagnosed. Despite the will to help, all the parties involved (parents, teachers, principal) could not move forward in the same direction. If the school recognized that Mimi had Dyslexia, then it was supposed, by law, to provide the proper teaching method at their own expense. It didn’t really matter if we were willing to pay for it privately.
At that point we decided to get an official diagnosis, hoping it would encourage the school to provide the specific support. In Spring 2021, we brought Mimi to a private pediatrician psychologists group for a battery of tests. With no surprise, she was diagnosed with Dyslexia. We went back to the school with an official diagnosis. Still, it was hard to provide Mimi with what she needed. Despite the good intentions, what we saw as a flawed system was creating a conflict of interests among the parties involved. I hardly doubt a teacher does not want to teach a child. Or a principal does not wish to provide all the students with an appropriate education. But we were all limited by these forced dynamics, some of us more comfortably than others.
We then learned from other parents (who kindly shared their stories) about their similar experiences. Years of dealing with attorneys to have their kids receive some support from the public system. Honestly, we were frightened and hardly understood an attorney-based right to education. At that point, we decided to try and talk to a private school. At least the conversations were not polluted by dynamics that didn’t belong in our child’s best interest.
We learned that there are schools specializing in Dyslexia. They cover the same curriculum as public schools (even richer, one may say), but with the critical difference that they teach in a way that works with dyslexic kids. Unfortunately, as these schools are private, the financial aspect became a critical decision-making factor. We were considering moving Mimi from a public school to a private ($25K-ish plus private tutors) and then to a specialized private school (the schools’ tuition we found ranged from $25K to $70K per year). I’m sharing these ballpark numbers to give an idea about what families need to face. In my opinion, every parent that has to deal with this is a superhero. No matter if they decided to stay in the public system or went for the private route. As we speak Italian at home, we thought our best solution was the private option.
At first, we found a school specializing in Dyslexia 15 minutes away from where we lived. There was just one problem with that. During our first phone call, they told us Mimi had to acknowledge her disability. They would teach her about her disadvantages compared to others and how to apply for support tools that the US education system reserved for people with disabilities. The phone call wasn’t even over when my wife and I looked at each other, agreeing that their approach didn’t work for us. There is obviously nothing wrong in having a disability. But the emotional challenge is part of the Dyslexia challenge, and we preferred an approach that empowered Mimi.
I am not qualified to write a definition about Dyslexia, nor do I want to underestimate that a person may be diagnosed at different levels, which might cause more or less severe challenges. But the way we are seeing and experiencing it, Dyslexia is a different way to learn, not a permanent disadvantage that is impossible to overcome.
Our search concluded that only one option worked for us in the Chicago area. A new program used multisensory methods and empowered kids about their dyslexic thinking. Hurray! Almost hurray. Unfortunately, it was too far from our home to make it a viable solution. And the program was still at an early stage; it still needed some upgrades in the overall education experience. Wishing them the best in their journey.
While 3rd elementary was approaching, we decided we had to radically change our scenario. After months of searching online and Zoom meetings, we picked what we thought was the best private school for our daughter. It was in California. We sold our house, we packed everything, I had to quit my job, and we drove to the West coast.
Mimi is now attending a school near Monterey, CA. She is thriving, loves learning (again!), and enjoys every day at school. She is very proud of her strengths and is overcoming any challenge that might have previously hindered her learning. We can see she is now on the right track to pursuing her dreams, as every kid should be.
So, why was that Passover night different from all the other Passover nights? After nine months since we relocated, Mimi (short for Miriam, Moses’s sister) decided it was her moment to speak up and let her reading and voice be heard at the Seder. One of the Passover teachings is to face your fears in order to reach your freedom; my wife and I witnessed how brave our little daughter was.
We have no resentment about this experience. We feel grateful for all the people that worked with us. We also feel privileged we could face this challenge the way we think works best for Mimi. But we also became aware of a chilling truth. One out of five kids in the US is dyslexic. This means that 20% of kids in the US have a high risk of falling into the cracks of the system. According to the Department of Education, a staggering 54% of US adults read below a sixth-grade level. 134 million people. A shocking number. Receiving an adequate education should not be a privilege but a right. By sharing Mimi’s story, we hope to help bring awareness to a challenge unfairly faced by too many families and kids.
A few links in case they might be useful: