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In our latest spotlight session, we had the pleasure of sitting down with Christine, an outstanding mother and passionate dyslexia community builder. We were honored by her incredible words and ease of sharing ideas and parental advice when guiding their unique thinkers.
Christine’s story is one of love, care, resilience, determination, and community. Throughout our conversation, she shared her experiences supporting her son’s challenges of dyslexia, from early years in school to how teachers and therapists have incurred in her amazing son’s life.
Christine’s openness and honesty in discussing struggles and triumphs gave us a unique perspective that will resonate with anyone parenting a dyslexic child.
We are thrilled to share her story with you.
Christine: I think there are a lot of doctors, therapists, and authority figures online who talk about neurodiversity. That is all wonderful, but I agree that there is not much conversation between parents. There are some Facebook groups, but a lot of them are more about people asking each other questions rather than parents who have been through it or are at a stage where they are not just starting.
I certainly do not call myself an authority figure, but I am pretty far along in the process. I can bring some value to other parents who may be just getting started. There is a lack of that. I wish that I would have had somebody who I could have turned to when I was starting.
There is a lot of stigma still in place, unfortunately. What I have learned starting in the very beginning was to talk about it. The more that I talked about it and the more that I talked about the things that I was seeing in my son or concerns that I was having, the more I realized that people were opening up and sharing with me: “My son was in speech therapy or my son was in OT.” People do not offer up this information. They keep it very close to the vest.
I just started talking about it because I need to get it out. That is my coping mechanism. What I found in doing that is that with me being vulnerable, other people felt comfortable being vulnerable.
Christine: I have a 10-year-old son. He was diagnosed with dyslexia, ADHD, and a nonverbal learning disorder or difference. We call them differences in our house, not disorders.
Neurodiversity needs to be rebranded because there are a lot of challenges that come with being neurodiverse. There is a fine line between toxic positivity, but also not becoming a victim of your diagnosis.
The way that we speak to our son about the way his brain functions is that this is just learning more information about how your brain works. When you can learn more information, information is power, in my opinion.
The more information you have about how your brain works, the more support and resources you can offer and put in place for a child to help them succeed and help them discover what the superpowers of their neurodiversity are.
He is a remarkable kid. He has such amazing verbal articulation skills far beyond his years. I credit that to dyslexia. He struggles with reading and written form, but when it comes to verbal expression, every teacher since nursery school has always said he is amazingly articulate for his age. He is almost compensated in that department. There are superpowers that come with it. I think you and your child need to stay positive as much as possible and uncover what those superpowers are.
Christine: He started young, at about two years old. He was only speaking three legible words at that time. I took him to the pediatrician and the pediatrician. They agreed at his two-year checkup that he should be speaking 50 words articulately. I took him to be evaluated by an occupational therapist. We went to our local regional center. The state of California offers free OT and speech services for children up until the age of three years old. After three, you age out of the program, and you have to pay privately or individually. We went the regional center route. They evaluated my son.
They agreed that he needed some speech therapy. He did speech therapy from two to three years old. I understand now that dyslexia does affect all language centers of the brain. It is not surprising that his speech was impacted at a young age. At the end of the time he turned 3, whatever was locked in his brain was completely unlocked. The regional center said he does not require any additional services. We are not recommending him for further speech therapy services. They said: “He is sort of the textbook case of early intervention, and then you get successful results to go on with his life.” I did not think much of it.
He went into nursery school, and I started noticing some things with his attention and fine motor skills and with his writing abilities or drawing and coloring. They were never interesting to him or would not hold his attention for long. He did seem to have some focus issues.
During nursery school, I saw some things, and he was in occupational therapy during his nursery school years. As a result, he started kindergarten on Zoom during COVID. Before he started kindergarten, the occupational therapist said: “He is great. He is going to start kindergarten. We are going to sort of graduate him from our program, and he will continue in kindergarten.” Then the pandemic hit, and suddenly, all of our kids were forced at home to learn virtually. I noticed right away that there is a six-year-old boy on the planet who is not going to do well on Zoom.
It was very hard for him to learn. It was not just the attention piece. It was that his teacher would write on the screen the letter A, a capital A, and a lineup, a line down, and connect the two lines in the middle. He would have to replicate that. It was a line over here, a line over here, and a line. To this day, I feel extreme guilt because I would say: “Does this look anything like what you see on the screen? You need to pay more attention.” I would get so frustrated with him because, for me, it is black and white. It seems so obvious. I realized over time that something was not, he was not seeing it the way I saw it or the way the teacher was seeing it.
He started our school, and luckily, they brought all the kindergarteners back, specifically starting in October. Within ten school days, I received a phone call from the kindergarten teacher. She mentioned that Nico is an amazing kid—super bright and one of the hardest-working students in her classroom. However, his output and the results of his work were only a fraction of what the other kids were producing. She noticed that something was not lining up and felt that something was off.
I was referred to the director of educational support services at our school, who helps design IEP plans for children diagnosed with neurodiversity. She advised holding off, noting that he was only in kindergarten, and we had started on Zoom, which was less than ideal. She explained that kids learn to read and write at different paces, and since he was a bright child, perhaps he just needed more time. By first grade, however, it became very apparent that he was not reading at grade level or writing like the other children. It began to impact his self-esteem, which was the hardest part to watch—a 7-year-old calling himself stupid and bad, labeling himself in those terms.
We were advised by the school to wait until the end of first grade to get him officially diagnosed. I was ready to take action because of where he was mentally. I wanted to figure out what was going on since he was labeling himself.
Many parents tell me they do not want to diagnose their child because they fear labeling, but I believe that if you do not diagnose them, they will label themselves with something far worse than dyslexia.
My child did exactly that—he thought he was stupid because he could not do what the other kids were doing. Of course, that was not true at all.
By the end of first grade, over the summer between first and second grade, we found a pediatric neuropsychiatrist. We got a referral list from the director of educational support services at our school, and I scheduled an evaluation. They evaluated him in the classroom right before the school year ended. We then went through a three-day evaluation process—three hours a day for three days. After that, he was formally diagnosed with dyslexia, ADHD, and a non-verbal learning difference.
Christine: For most kids, the diagnosis is four to five hours a day for two days. About an hour into the very first day, the psychiatrist came out of the office. He was there with an assistant. He came out and said, “He is not going to make it through a four to five-hour evaluation today. I think I could probably get two more hours out of him. But, it is best that we end it, and maybe we can add an extra day at the end if you guys would be willing to do that.”
I said: “Absolutely, you know, whatever is going to help make the evaluation the most accurate.” Pretty much right at that moment, I knew for a fact that he was going to be diagnosed with some form of ADHD because the doctor was pretty much admitting we were not going to get through this in the way that we typically could or should be able to. I was not in the room for the actual testing, but from what the doctor was telling me and my son shared with me, he actually had a blast. He had fun. He still talks about Doctor Jensen and wants to go back and play with him. They played a lot of math games and reading games and letter games and games with puzzles and patterns and things like that. They would take breaks and play Mario Party on the Nintendo Switch. Obviously, that was his favorite part of the whole evaluation, and beating the doctor in the game and all of that. They make it fun for the kids. It is definitely not a laborious torturous process. My son still talks about it as fun: “Could I go back, and do I get to go back?”
Another thing the doctor told me was when he saw that my son was getting frustrated with one particular activity, even if he was not going to take the video game break yet if it was not time for that, he would then switch to another activity. If they were doing something numbers-related, they would switch to letters and then back and finish the number thing later. They are very skilled at this. This is what this man does all day every day. But, you are right. It is tricky for some kids.
Christine: Fortunately, our school has a person on staff dedicated to students with neurodiversity. It was very easy for me to go to the director of educational support services. Her name is Doctor Courtney Barrenhausen. When the evaluation was complete, I took it in hand and went to her. We sat down and went through all the diagnosis. She met with every single one of my son’s teachers.
Now, he was entering second grade. He met with the kindergarten teachers and the first-grade teachers. The second-grade teachers in his IEP would see the things that Nikko struggles with and will need extra support on, but also, his strengths and the things he is good at. As a teacher, they were able to say, OK, here is what he needs support on, but here is what he is good at. So, I can use his strengths, capitalize on his strengths, and almost use that to support what his weaknesses are.
They have done an amazing job of things like extra time on tests. That is pretty obvious. He just started tests in third grade. Last year was his first time taking official tests. He did receive extra time on that. Third grade was his first academic year officially reading at grade level, which was amazing to get him there.
Starting the second half of kindergarten, even before he was diagnosed, we did hire an educational therapist for outside support from the school. I credit her completely with getting him reading at grade level because the way the school teaches reading to children is not the way that my son can learn to read.
The way that I explained it to him is that it is not that you cannot learn how to read, it is that you need to learn it differently.
Wendy, his educational therapist, teaches him to read, and she uses the Orton Gillingham method, a method that his brain can understand how to learn to read. In third grade, he was officially reading at grade level, but he was still struggling with writing. So, our school allowed him to do speech-to-text because he has amazing verbal capabilities, and he is an amazing storyteller when he is telling you a story. However, when it comes down to writing it on a piece of paper, he freezes because now the spelling comes in, so he is so consumed with how to correctly spell a word that he loses his train of thought, or he just kind of stunts his thoughts in a way where he could come up with these amazing details to a story.
When he is writing, those details just go out of his head because he is so focused on trying to spell correctly. He sort of has a little bit of a perfectionist complex also where he will look at words, and that is not correct. “I know I did not spell it correctly.” That is great because he is recognizing his brain, at least can recognize that it does not look right. “I do not know exactly what the mistake is, but I know it is not right.”
In third grade, he was able to start to identify: “I need to add an E or O. I wrote B instead of D.” He is catching himself now; his brain is catching itself, which is amazing to watch.
Christine: That was when our occupational therapist came through. The kindergarten teacher came to us and expressed her concerns, even though we were advised not to get him diagnosed till the end of first grade. The reason that they recommend that, by the way, is because the evaluation process is often not covered by insurance. It is pretty expensive. It can be quite costly.
We are paying Independent School tuition, and so to now invest in this evaluation process, and all these outside resources add up very quickly, and it can be quite cost-prohibitive to some people.
The school sort of recommended getting an educational therapist and putting him back in occupational therapy for fine motor skills to help him with his executive function and regulation of his body in a classroom space. We immediately started OT back up again, and I found this educational therapist. She was located in Palm Springs and only worked on Zoom. At the time, that was perfect because everyone was on Zoom. We were in the middle of COVID. He continues to work with her that way because she still lives there all these years later. They have a great rapport together. He is very comfortable with her. He is comfortable with the format at this point.
We have kept her on because a lot of people will say, “On Zoom, why would you do that now?.” But, we have a four-year history with her at this point. They work very well together, and he is continuing to make amazing progress. I do not want to fix it if it is not broken.
Christine: Games, not really. There are apps that, especially this past school year, I found very helpful. Speechify is one of them. In third grade at his school, part of his homework would be to read a reading passage that was typically two pages and answer a series of five to ten reading comprehension questions. Before Speechify, I would sit there with my son, and I would read one paragraph, then he would read the next, then I would read a paragraph, then he would read the next and try and get through it that way. What I realized kind of quickly is he was in school for seven hours that day, right?
To come home now and have homework, I wanted to make the homework simple. I am not going to sit here and have him read this and just kill himself doing it after he has been sitting in school reading all day. I found Speechify, and what you do is take a picture of any text. It could be a sign on a wall, a textbook, a worksheet, whatever it is, you take a picture of it.
It has a variety of different celebrity voices. My son is a big fan of Mr. Beast on YouTube, and Mr. Beast is one of the voices on Speechify. You enter your child’s information, and Mr. Beast says, “Hey, Nico, it is time to do your homework. Let’s get reading.” He will read the reading passage to my son while I am folding laundry or doing other things around the house.
He can actually do his homework more independently without me sitting right next to him, which also helps with his self-esteem and confidence for sure.
My son is very much an auditory learner. If you tell him something, he will remember it. He is like an elephant. He will remember it years and years and years later. If he is reading something, it is hard for him to answer questions about it, but if he hears the story, the reading comprehension becomes super simple, and he is able to answer those questions and focus on his writing more than the reading.
You have to be creative with your kids in this way where these kids work so much harder than any other kid in the classroom when they come home, they have to deal with homework. At our school, in particular, in the public school system, you can ask for homework modifications. I went to our school and asked: “Is there a way to modify the homework?” We were told at our particular school: “No, ’cause it is an Independent School“.
They were saying: “You can modify the homework as far as how you get it done. The bottom line is that he needs to be completing the same amount of homework as every other child in the class, but you can be creative with how that gets done.” I did find things like Speechify. Why torture him to sit there and read these two pages?
The point is he is understanding what he is learning, and can he write it down? The comprehension part was the part that I had him focus on the most.
Christine: Nico is a visual and auditory learner. As an example, the teachers were teaching the kids social studies and world math, and the kids had to label all the continents, the oceans, the hemispheres, and the equator. She taught it to them on the board, showed them where everything was on the map, then handed out sheets to all the kids and told them to label the map. My son sat there and looked at this giant blank space. To his credit, he stood up and walked over to the teacher’s desk and he said, “Missus Dillon, I know all the answers. It is just going to take me until next year to write it all down.”
What can I do? So she said, “OK, Nico, point to the map and tell me what is on this map.” He did it in less than a minute and got every single thing correct on that map. She was blown away because other kids forgot what Africa was or Europe. He knew everything. There was a test about a week later, and he was nervous about that. She gave a word bank to all the children. At the top of the map was a word bank with every single word that they needed to label the map. Again, my son was concerned: How am I going to take the time? This is a time test to write this all out.
The teacher got her certification to be an educational therapist, which was amazing timing for my son and her future students. She got very creative. For him and a couple of other kids in the class, she turned the word bank into stickers. The kids just peeled off Europe and put it stuck it on the map instead of sitting there and writing it out. I was just blown away because this is such a simple solution to helping a child demonstrate the knowledge that they actually have. Whereas, for someone else, another teacher might sit there and be like, “He does not, it is blank. He does not know anything or he only wrote two of the continents, and he does not know the rest of them.” He knows. He just did not have the opportunity to demonstrate to you that he knows.
Teachers, parents, and educators we all need to be creative for these kids in helping them get what is in here out on the page. There are ways to do it. I thought that was just a brilliant but totally simple and yet super effective way to help these kids do that.
Christine: There is a saying that it takes a village to raise a child. It definitely takes a village to raise a neurodiverse child. You do not have to do it alone.
There are tons of experts, teachers, doctors, therapists, and even lawyers. If you are in the public school system and you need help getting a 504 or an IEP for your student there or get placed in a school district, maybe it is not your assigned district school, but there is a school in a town over from you that has a program specific for autism, ADHD or whatever it might be. Some lawyers can help you get into those schools, and build a village for sure. One of the things that I felt lacking once again is there are all these experts, and you can pay a lot of people to tell you a lot of things. What I really wanted was a connection with other parents. The only way I really found that was online.
For me, that just feels kind of hollow because obviously, you are not even, this is more personal. I can see your facial expressions. We are connecting. Just writing a comment on a post is nice, but it is not a genuine connection.
Our school has tons of different affinity groups, the black heritage families, the pride group, and the API affinity group. There is an affinity group for everything at our school. Nico was saying, “I am the only kid at Campbell Hall that does not have that. I am the only kid who has ADHD and dyslexia.” I was like, that is not true. In talking to Doctor Courtney Berenhausen, she said, “His school is AK through 12 school. There are actually over 360 kids with a diagnosis at our school. There are probably plenty more that have not been diagnosed yet. If every single one of those families joined this affinity group, it would be the largest affinity group at our school.”
My wheels started spinning. If my second grader thinks he is the only one at this school, then there is maybe a fifth grader or a tenth grader. Their parents must be thinking too. In a lot of these independent schools, there is a fear factor in a way, if my kid does not perform or cannot keep up, then we are going to be asked to leave. I think, especially in that type of environment, people do not want to talk about it.
I am someone who is going to talk about it, and I have no shame and no fear. I do not think that there is shame or fear in this. This is not a death sentence.
A diagnosis is not a death sentence. It is a diagnosis. It even helps you: How does my brain work? How can I best help myself get through the day?
I approached the school, and I said, “My son and I would like to start a neurodiversity affinity group at the school and have programming that is geared towards parents.” We’ve had OTs come and speak, neuropsychiatrists come and talk about how to get your child evaluated, and talk to parents about emotional regulation at home versus at school.
How do you how do you help a neurodiverse kid with homework? We have had all these amazing guest speakers come and talk to our parents and then we also have programming for the kids that is not like a group therapy session or anything serious like that. It is super fun. We have played kickball in the park. We have had a board game day in a classroom where we have the high schoolers and the elementary school kids playing board games together.
It has almost turned into a mentorship opportunity where my young son and his elementary school friends are looking up to these high schoolers and being like you have dyslexia, you have ADHD, you are going to Yale in the fall, going to Michigan, or succeeding in your history class, or you killed it on that math test. I can do it too, and I am not the only one. I can be successful at this school being neurodiverse.
If you do not have that connection or you do not have those resources, build it and they will come.
That is what I did because I felt a lack around me. If I am feeling that, then other people must be feeling it. I am going to create it.
Christine: Thank you for asking this question. It is something that we have definitely struggled with, especially in the beginning when putting Nico in speech therapy and OT having him evaluated. Many family members were asking why we would do that: “He is fine. You are inventing issues. You are gonna make him think he has a problem. He does not have any problems. He is great. You are the one with the problem, and you are creating and making him think he has a problem.”
And I kept saying, well, I do not think it is a problem. I see that my child is struggling, and I would like to help him. If your kid is drowning off the side of a boat and you have a life preserver in your hand, for me, I am going to throw the life preserver to my kid. So speech therapy, OT educational therapy, getting him evaluated and diagnosed, that is me throwing a life preserver to my child. I think it would be amazing for family members to not be dismissive of it.
Support the parents in their journey because it is hard enough, and it is scary. It is hard to watch your child struggle and to be judged by family members or friends on top of that. It is literally the loneliest feeling in the world, which I think is another reason why I wanted to start this affinity group. Other people in the world get it, who understand, who are, who have gone through this journey or are going through this journey and will talk to me about it in a way where it is not like: “Why would you, why would you put him in, you know, educational therapy? That is ridiculous.”
Well, I put him in educational therapy because now he is reading at grade level for the first time in his life. If that makes me a bad parent, then call me a bad parent, but I am not sorry. Just do not dismiss things that you know or concerns that parents have. Listen to them, support them. If a parent is going to go on this road, there is a good reason for it. We are not making up things about our kids. It is hard enough.
Do not be judgmental, and do not be judgmental of the child. We have had Nico come such a long, long way, but when he was a lot younger, he would get extremely emotionally dysregulated and that would just look like spinning circles around the dinner table at family dinners.
Sometimes it is relaxed parenting, but sometimes there is something else going on with a child that you have no clue about. Instead of shooting a parent a dirty look because there is a kid on the ground throwing a tantrum, they might be non-verbally autistic, and that is the only way for that child to express themselves. They might be completely overwhelmed by the fluorescent lights at Target, and they do not know what is happening.
You standing there and looking at them, that mother who is exhausted and terrified and embarrassed herself and look at her like get control of your kid. Just have a little bit more compassion, kindness, and empathy towards all parents. It is hard. Whether or not your kid is neurodiverse or not, raising a kid is hard. We all have our moments. Every kid has their moment, but especially ours. And we are doing the best that we can. Compassion and empathy go a really, really long way.
Christine: It is absolutely my pleasure. If I had one thing to say to any parent is to not be afraid of this process. There is nothing to be afraid of. If anything, this is an opportunity for you and your child to understand and get to know your kid’s brain better and help your kid discover who they are, what their weaknesses are, but also what their strengths are, and how they can turn those into superpowers.
It is actually a really exciting journey if you can focus on that piece of it more than all the struggles and all the hard stuff. Do not be afraid of it, and do whatever you can to help your kid and throw them on a life raft because they are drowning, and you know to have a parent who says you will grow out of it or it is going to get better. It is not going to get better if you take 0 action. It will only get better if you take action.
Take action and help your kid because honestly, there is nothing better and progress can be made and is being made and he would not have come this far if we had waited. He would not be in the place where he is today if we were just starting now. He would be far worse off than he is. Take action and help your kid.
We hope you enjoyed this spotlight with the incredible Christine Kirk. Stay tuned with our coming interviews with the community.