Our Dyslexia Story
by Eva Alcala
I first heard the term Dyslexia when I was in college and my brother was in High School. All throughout his school career he was simply a “Slow Learner.” When we were little, all I knew was that it was almost a punishment to have to help him with his homework. I would get home, complete my assignments and then I would have to read to him and most nights I would write the answers and have him copy them on his worksheets. As he got older his workload was reduced and he was diagnosed Dyslexic. I was happy it was over and I would not have to deal with it again.
I was wrong.
My son Rafael was a good baby, he hardly cried. He took his time learning to walk, which worried me and also let me enjoy the baby time a little longer than other moms. When it was clear that he was not talking and forming words, I got worried. It was the same as my brother. I shook off the worried thoughts and assumed that it was what so many well-intentioned family members said, that he was spoiled and didn’t want to talk because he was an only child.
When I tried to have serious conversations about it with my spouse he simply stated that I was reading too much into it and that our son was fine. I remember one visit to the pediatrician where she asked if he was saying words and my spouse said he was. That simply wasn’t true; he had been making noises and pointing at things he wanted. That’s when I knew something was wrong. I just needed to find someone to hear me out and tell me what to do next.
One day when, our son was about 4 years old, we received a note from daycare, a speech therapist had screened all the children and our child was believed to need speech therapy. All we needed to do was provide his Medicaid information and it would be taken care of while at daycare. The only problem was, we do not have Medicaid. I talked to my health insurance provider and they stated they did not provide speech therapy. They also noted that my son refused to participate in a hearing test normally completed at his annual check-up.
We had a first step; he needed a Pediatric Audiologist Evaluation. He passed the exam and I assumed a speech therapist would contact me soon. He could hear, he just couldn’t talk. I was told again that speech therapy was not covered by my medical insurance.
I decided that I would take my son to the best place in town to be evaluated, and since we live in Houston that place is Texas Children’s Hospital. I made an appointment and took my son. The young lady who greeted us was very kind. I broke down crying, I was so emotional. My son needed to excuse himself and she heard him communicate with me. She asked a few questions, and then she told us that she was going to cancel the appointment, she stated that it was too expensive for us to pay out of pocket. She referred us to our local school district’s special education office.
Once the appointment was made at Pasadena ISD, we took my son in and he refused to look at the ladies conducting the evaluation, much less talk to them. He did this occasionally when he met a new person as he is very shy. It took a few visits to complete the assessment, and they let us know that he needed speech therapy. The school would provide it, but they would not admit him to their pre-kindergarten program. I decided to send him to Catholic Pre-School to get him into a more rigorous learning environment, and Pasadena ISD sent the Speech Therapist to his preschool to administer the therapy.
In preschool the teacher met with us at the open house and at regularly scheduled Parent / Teacher Conferences. She always let us know that he didn’t like coloring, he didn’t want to complete assignments, and that she always had to redirect his attention, because he was always very distracted. She assured us that if he attended summer school she would have less children and that she could devote more time to teaching him his sight words since he was the only child that hadn’t learned any yet. A few months and a few hundred dollars later we were at the same place. He had not learned the alphabet, much less sight words, and now he was entering kindergarten.
In kindergarten he had a great teacher, he was excited to start school, and one of his T-Ball teammates was in his class. At every parent / teacher conference his teacher stated he was just a little behind everyone else, but that she had dedicated a little more time to him and the other kids who had not learned the alphabet. In April at the last parent / teacher conference she finally said that he would most likely need to be retained. It was upsetting but I also knew he wasn’t passing. I was looking into enrolling Rafael at a new charter school in the area, and he could repeat Kindergarten there.
One day in the car line the Kindergarten teacher let me know he was going to be placed in First grade. I couldn’t just accept that comment, what had changed? Why did she casually mention it that way? I called her later that week, and she explained that if Rafael went to First grade and he struggled there that he would be evaluated.
The new public charter school in our area had a good philosophy about rigorous learning. They were going to open their doors for the first time that summer. I had to know what they did if the kids could not learn at the same rate as the other kids, what if they needed Special Education? I spoke with the director and she let me know that her school was not prepared for Special Education and that the public schools were better equipped for those students.
We stayed at the public school. I had to get the school to diagnose him. On the second day of school in first grade, I emailed Rafael’s teacher and asked for a full evaluation. It took a few months and when I got the results it was confirmed that my son was Dyslexic.
There it was again, Dyslexia.
By then I was spiraling down into thinking it was one hundred other things as well and that he would never be independent, that he would always need a caretaker. Those thoughts still creep back every now and then.
What next? The school called an Admission Review and Dismissal (ARD) meeting to tell me how they were going to help him. I was so happy that they said and wrote the word Dyslexia in his paperwork that I was sure they were using the methods needed for him to succeed.
Three years later I am still not convinced they are.
A year ago I was spiraling again wondering if I should be doing more for Rafael. I decided to search Facebook for Dyslexia information. I found a Dyslexia group and over the next few days I read the questions and comments of several parents that had some of the same concerns and questions I had. I decided to search the comments for the program that my son’s school was using. Not one person had written anything about it. So I asked the community if anyone had any success with the Leveled Literacy Intervention, and only one person replied. She stated that LLI was not for Dyslexia, she shared a link for me to see for myself the comments from the Publishers about how their program was not intended or recommended for Dyslexia. My heart dropped. How could this happen? What had my son been doing at school for the past two years? I spent as much time as I could researching what questions to ask, what services to request at the next ARD, and what resources are available in Houston.
It was time for the ARD, I sat patiently waiting for my turn to talk. When it was time I started crying, but I powered through and handed over a screenshot of the publisher's’ web page where it stated that their program was not intended for treatment of Dyslexia. They had nothing to say, I asked why he wasn’t in Dyslexia class. I asked this every year and every year they told me he was too far behind the other Dyslexic kids, this time was no different. I was so upset I just signed everything and went home to continue crying. The next day I continued researching. I emailed the Texas Education Agency and someone at the school district with “Dyslexia” in her title. A few weeks later I was called to attend a revision ARD to sign the paperwork allowing them to start including him in Dyslexia class. I had to ask, what had changed? Why was he allowed to attend now, after so many years requesting this? They simply stated that they reevaluated the second grade groups and that he fit in with one of them. Again I got so upset I was happy they were going to include him now, but why does it take so much effort to get him the help he needs? If I could have sent an email a few years ago he would not have missed all this time away from Dyslexia class! I signed everything and went home to cry.
I was so eager to meet this Dyslexia teacher. I scheduled a call with her, and I was so disappointed. I thought that all we needed was to get him in her class and he would hopefully start learning his way, on his terms. When I asked about her training she stated she was trained in the Dyslexia Intervention Program. I asked if that was a long process and she stated that it consisted of a few days training. How can this be the standard? Here we are again, wondering if my son is being taught in a way that will help him learn. If I let this continue will he start to give up? How many more years do we have of Rafael waking up and courageously walking into school knowing he is years behind his peers? What do I respond when he doesn’t want to go anymore?
Every school year I get hopeful that this will be the year that the code is cracked and my son starts succeeding. I keep telling myself that soon he will figure out what works for him and it will be smooth sailing for the rest of his school career. I never stop researching resources, I fantasize about moving away to where Dyslexia schools are free, or where there is a certified person administering Dyslexia intervention at every campus.
Good things have happened this year as well. I asked the Neuhaus Education Center for a list of Dyslexia tutors in my area. My son has been attending tutoring after school with a teacher who is working towards her certification. I know he needs this to supplement the education he receives at public school. He always asks when he will be done with tutoring. I tell him that his brain is different and that he needs a special teacher to teach him in a way that he can learn.
We still try and make time for Rafael to try sports and other activities. This fall he is participating in basketball. If you get the chance to have a conversation with him, you know that he is very mature. He loves to go to the movies, he will ruin the ending to any movie he has seen. We try to keep him busy learning hands-on at several museums in town. We try to vacation once a year and we always make time for something educational. We as parents also try to add fun things in our lives. I am thankful that my husband loves to cook so while Rafael and I are at tutoring or some other activities dinner is ready when we get home. One month out of the year we volunteer at Rodeo Houston, it involves attending Happy Hours and other special events. It helps us get out of our normal routine for a few weeks; we go out on school nights!
In the future I endeavor to do more for the Dyslexic community. If I can give a speech or write something that will help school administrators or just anyone understand where we are coming from, that would be a great accomplishment. I cry so much at meetings and when I talk to friends. I am trying to work on being able to get through ARDs and talking about it while still being able to listen attentively and express my thoughts clearly. Everywhere I go I mention Dyslexia, it’s my way of learning to talk about it. I know to some people it’s probably annoying, or maybe it’s something some people are ashamed of. I feel that the more people I talk to about it the more awareness there is. I still run into people who tell me he will grow out of it, or that it is like anything else in school that he just needs to focus. If you know me well you know I am stubborn. I will be here, researching, speaking to strangers about Dyslexia and looking for the next step. Dyslexic kids do not come with instructions, and we are all just trying to find the next step.
Our guest writer, Eva, is a passionate parent advocate to her beautiful Rafael. Her journey is similar to so many, and she’s right, the fight shouldn’t be this hard. We hope her story resonates with you and that you know you are not alone. We are honored to share Eva’s story with you.