Life, With kids

My Drought: An Up Close and Personal Encounter with Dyslexia


Hi!

It has been a long time! I have been in a drought. It wasn’t the lack of ideas because I have a mood board featuring my favorite summer to fall dresses, a couple of book reviews, and an idea for an article about first days of school (too late for that). But for some reason, I couldn’t get myself to blog or write a single word. I had lots of emotions and judgments around that. Then it hit me. The elephant in the room. The reason why I haven’t been able to write about dresses and books, it’s because another story needs to be told and it has been waiting for me to be brave and vulnerable to share it. Until now. I thought it didn’t belong to me; it belonged to my daughter, Amanda. I wanted to respect her privacy; I wanted to respect her story. I thought that I was only a part of it, but the truth is that I have a story to tell too.

When I was 33 weeks pregnant with Amanda, my doctor put me on bed rest since I had a condition called oligoamnios, which means that you have a deficiency of amniotic fluid. I went to the doctor’s office every other day to check the amount of liquid. The doctor’s face grew more concerned every visit. By the last week, I was going for a sonogram every day. It was a Tuesday afternoon when he told me Amanda had to be born the next morning at the latest. The next day, at 2:14 pm I felt a pull, and I heard Amanda’s “voice” for the very first time. Dizzy and confused I saw her little noodle legs and her big brown eyes. I fell in love. “You have a beautiful, and healthy baby,” the pediatrician said. I hugged and kissed her, and then they took her away. I passed out. When I woke up and saw my doctor, he said he couldn’t explain why Amanda could survive inside of me since I had no liquid left. A dry birth. “She is strong,” he said. He was damn right about that. Amanda stayed in the NICU for the longest 48 hours, and I couldn’t wait to touch her again. I felt sad for not being able to hold her, to talk to her. I remember as it were yesterday when they finally brought her to my room, the second time that I carried her. A big-eyed five pound baby with the same noodle legs that I remembered from the first time I saw her. She was tiny, but she was strong. She is strong.

Since her first months, Amanda has been a child that glows. She is a happy, kind, and sweet soul with an imagination that can build millions worlds and universes. Her creativity has no limits (yes, yes, her mom writing here). She truly has a gift. But sometimes with a gift comes a struggle, and for her, it is reading, and in our world, this gift has a label, and it is called dyslexia.

We found out she had dyslexia a few weeks ago, but as a mom, I knew it all along.  It all began in Kindergarten when she made very little progress in reading and writing. She memorized the books that were read along to her to pretend she was reading. She could “read” the word “house” in a book that she’d memorized, but if she saw that same word in another book or a flashcard, she couldn’t read it again. That year, her way to avoid her feelings about not being able to read and write was bringing “props” to school to get distracted. She would wear boas or sunnies or some eccentric item. This is natural for her because she is a little fashionista and a very histrionic girl. I told my concerns to the teachers, but they said it was too soon to know and also that bilingual kids sometimes take more time learning to read because they are processing in two languages. It made sense. We speak only Spanish at home (though lately is more like Dora the Explorer type of language… ugh!) and at school she was learning and socializing in English.

In the first grade, I talked to the teachers about how she memorized books, and she had trouble reading the most simple sight words, but again, they said it could be developmental. The problem got bigger, so instead of being in a reading group she began one on one instruction but made no improvement. I asked again if they thought she had dyslexia and they said it was too soon to tell, but the distractions and lack of focus were more pronounced. She couldn’t bring props anymore, so she found other ways to avoid the classroom by taking long trips to the bathroom or trying to chat with her classmates. She began to get labeled. “Amanda can’t sit still.” She also began to work with a great tutor, and she made some progress but still she was way behind.

By second grade, she was way behind her peers regarding reading. She got the fortune of having a couple of teachers that could recognize Amanda’s struggle right away not by labeling her but by seeing the whole picture. They knew that Amanda’s way to cope was losing focus, chatting and moving around. Both teachers were well aware of Amanda’s gifts and tried to encourage her through positive reinforcement and one on one instruction. By this time, Amanda was well mindful of the fact that she was falling behind and all of this began to impact in her self-esteem. She began to compare herself to others; she began to label herself as “the one who doesn’t read.” She didn’t say it out loud, but I could see it. One day, I went to her classroom and saw a basket with a sign that read “Amanda’s books.” .When I first saw this, my heart sank,  I felt fury all over my body. I talked to the teachers who obviously didn’t want to hurt Amanda’s feelings, and they took off the sign right away, but I wondered for how long has that sign had been up? How did she feel to have her very own “easy readers” basket when all the kids in the class were reading chapter books.  The teachers suggested going to a developmental optometrist to check out her tracking. Sometimes, one of the eyes moves quicker than the other by nanoseconds, and this makes it very difficult to read.  Amanda’s vision was perfect and her tracking too, but like any other business the optometrist suggested to come back for a few sessions “just in case” ($$$$). No, thank you. So she continued working with a tutor, twice a week now, the progress was inconsistent. It was awful to take her after school because she barely had time to play or play dates, was this the right thing to do? It felt like too much.

We decided to do a neuropsychological evaluation. We took her to a renowned bilingual neuropsychologist from UCLA, he took months (MONTHS!!) to give us the results. “Moderate to severe ADHD,” he said and that, in cases like hers, medication was the right path to take. “Does she have dyslexia?”, we asked. “No, she might have a reading disorder due to her lack of focus and hyperactivity.” Huh? I couldn’t believe it. It didn’t seem right. I may not be a neuropsychologist, but I am her mom, and I had known her all her life. I was not in denial; it just was that something inside of me knew this wasn’t accurate. Something was going on, yes, but this was not it.

I started doing my research online, consulting various educational therapists, talking to our pediatrician who turns out is a developmental pediatrician and other moms who have kids with learning differences. Still, the ADHD diagnosis didn’t resonate with me, and medication wasn’t an option. I tried, believe me, I tried to “buy” this diagnosis, but every time I thought about it or looked at her, it just didn’t clicked.

During the last parent-teacher conference, her teachers shared with us the great news! Amanda was reading. In just a few weeks she has closed a huge gap, they said. I couldn’t believe it! I was beyond excited. We bought some books for the summer and began to read most nights. I could see a little progress, but I still saw a lot of struggle. She was reversing letters and words, and not being able to read super simple words. At times, I got really frustrated. I would roll my eyes impatiently at her when she made a mistake or when she was reading at a super slow rate. “It is not ” the, it’s “and,” I would say despairingly. Or sometimes I would just avoid reading with her at all. I’m not proud of this. I even thought she was not trying hard enough. But the truth is that she was, she went every day for two hours to an Educational Therapy Institute to work on a program to improve her focus and attention. A nightmare would be an understatement of what it took to take her every day, but little did I know that a nightmare was an understatement of what she was going on inside of her. She knew she wasn’t making any progress.

One week before the school started, after sharing to a therapist my frustration with Amanda when she read, she asked me if we had ruled out dyslexia. I said I was sure she had it but that the neuropsychologist told me she didn’t. She suggested that I asked the educational therapist whom, as a side note, raised a daughter with dyslexia and had seen hundreds of kids with learning differences. When I asked the ET, she said: “of course she has dyslexia.” Wait, what? No, the report didn’t say anything about dyslexia, it said ADHD. She pulled out the report and below the ADHD diagnosis it read ” Specific Learning Disorder.” If you google that, guess what comes up? You guessed right: dyslexia. It turns out, it is common that the two (ADHD and Dyslexia) come in a pair, but in this case her inability to read and decode cause her lack of focus, and not the other way around.

Besides feeling furious with the person who applied the evaluation and failed to explain it to us correctly, my first reaction was feeling guilty. Ah, the favorite companion of motherhood. Guilt about not doing enough. Guilt about not following my instincts and not asking for a second opinion. Guilt about not being able to help her and about asking too much of her. Guilt. Pure, useless, paralyzing guilt. I focused on what I’ve been doing “wrong” all this time. I thought of all the things I could do to help her, and I started right away. Meetings with the teachers, researching online, watching videos, reading books, talking to specialists. I put myself in action. I still was feeling pretty sad, why? It is not like she has a disease, it is not the end of the world. Why is this so painful? Because it is my daughter’s struggle and to me, that is enough to feel devastated. My girl’s suffering. She is feeling stupid when she is one of the brightest persons I know. She is feeling different. When her being different is what makes her so unique. What is wrong about being different, anyway?

It has taken me many days to realize that my pain had a lot to do with acceptance. Acceptance of what is. Sigh. This is the first time that I  stop myself and breathe in and out and just to accept it. One of the central teachings of the Soul-Centered Living Certificate I took last year  is to observe yourself in front of an issue, and that issues are presented for us to learn and grow. Feeling guilt and entering in research “solve-it-all mom” wasn’t helping her or me. So I stopped, and I asked myself: what do I have to learn about this situation? Maybe I have to learn that life has presented this issue to my daughter for a reason and I don’t have to understand why. I just have to accept it. I cannot control her having or not having dyslexia. I cannot make her read. I cannot make her skip the feelings that come with this struggle. She just has it. She has to live her own process. What is my role, then? My role is to be there for her, to remind her how unique she is, to be her advocate, her voice until she finds hers, to be her biggest fan, to give her tools to be proud of herself and to teach her how to embrace her gifts. To be her mother. To be her proud mother.

I talked to her about it. About how her brain works differently from most people. I explained that most people have to read using just one side of their brains, but she uses both and that it can be very hard and confusing. I explained to her that she has to learn “tricks” to be able to read, and that will take time. It will probably mean that she will have to work harder than most of her peers, and that didn’t mean she’s stupid. It is a gift, not a disability; it is an opportunity to grow (for both of us). I don’t want dyslexia to become her label. I want her to own it proudly, as a gift, rather than a disability because it is not one. I don’t want it to define her.  I want her to see the advantages that this trait has: curiosity, imagination, creativity, intuition, insight, to name a few. She is more than a learning difference. She is much more than that.

I am hopeful. Today, I understand the pain I am feeling, and why every time I think about her strive my throat closes, and my eyes start to well. Deep down I know she will be okay, I know she will thrive, it’s just that it is hard to see her suffering, it is hard to see your child struggle, and that is just part of being a mother.

I am sure this is only the beginning  of a journey full of learnings and insights because dyslexia is not going anywhere, but that strong noodle-legged baby that once made her way out into this world not having a drop of liquid inside my belly, has grown to be a strong little girl and having a learning difference won’t stop her from shining.

,

Marcela

P.S. Thank you to my new mommy group because if it weren’t for them and the safe space they provided for me to be vulnerable and say it out loud for the first time, this blog would be sitting in my drafts where it had been sitting for a couple of weeks now.

Resources that have helped me understand dyslexia: