For our Ask the Expert blog series, Pathways Institute asked parents for their stories, with the idea that it would be helpful for parents to hear from other parents about their struggles and transformations. We asked: What has this journey of parenting kids with learning differences meant to you? How has it transformed you? This is the response from one of our parents. She requested to remain anonymous out of respect for her children.
Can you describe the biggest challenge or crisis you faced as the parents of a child(s) with learning differences?
There really wasn’t a single big challenge or crisis with my son and daughter and their learning differences. The truth is that when you have children who have diagnosed learning differences it is much more about managing life from one small crisis to another. However, there was a defining moment for me that forced me to rethink how I was managing my kid’s education and treatment.
I had my children late in life, and I can’t imagine my life without them. They were born 20 months apart and they have always been each other’s best friend. When they went to the preschool by our home I enjoyed walking them to school and watching as they ran off happy to play with their friends. I thought that their entire academic career was going to be that easy and that fun. After pre-school, they attended a parochial school by our home. We were thrilled to be in a local school with a rich academic history.
I could not have guessed that my son had learning differences in kindergarten. He was happy, carefree, and participated in everything; his nickname was Happy Jack. By first grade it was clear that there was a problem, and by second grade, my beautiful smiling little boy was gone and had been replaced by a shy, reticent child. He had anxiety attacks in the morning and he struggled to get to school. His teachers and classmates loved him because he was an easy-going kid, and other than his dyslexia, he was the model student.
In second grade we had a thorough neuropsychological evaluation. The problem wasn’t getting the testing or even understanding the testing; the problem was that there were too many teachers and administrators at the school offering advice and suggestions. Of course, only one of the teachers was credentialed in Special Education. All of the other teachers had heard about, or read about something that someone had said about dyslexia. Every week it was a new plan, and a new idea. It was extremely frustrating. The doctor responsible for the evaluation said that with tutoring and a few accommodations that my son would in fact be capable of the same work as the other students. He also stated that moving him to another school would be detrimental to his self-esteem and self-confidence; and he was right. At the end of second grade the school did not renew our contract and kicked him out.
For some reason it wasn’t quite as surprising when the school identified my daughter as having a learning difference. At that point I knew the drill and I knew what to do. We had a very extensive neuropsychological evaluation. We took it back to the school and put a working plan in place, got her a tutor, a therapist, and set up a few accommodations. But it was sort of odd in a way - at school the teachers and administrators treated us as though we were part of some “Secret Society.” Meetings happened behind closed doors, and no one talked about the issues in public. Both my kids had the same tutor. She became a part of our family and in many ways she became the voice of reason. She became a part of how we ended our membership into the “Secret Society.” My mom or I would meet her in front of the school, in front of all the other parents and students to hand my kids off to her for their tutoring sessions. We were very public and very open about their dyslexia.
Despite the tutor and the accommodations and my daughter’s progress (she was in third grade and reading at a third grade level) we continued to have problems with the school. Every week there was a change in plan, a new strategy, and a new accommodation. And again there were several well-meaning, young, childless teachers who had no Special Education training, but were thinking about being a Special Education teacher, who offered insights and suggestions. It was one of those well-meaning teachers who sent me hurtling into one of the worst days of my parenting life.
It was a Saturday and I was rushing off to work for a community meeting, when I opened an e-mail from one of my daughter’s teachers who had “concerns” about my daughter expressing that she wanted to be a shark. She was a third grader with an incredible imagination. She felt that my daughter needed “intensive psychotherapy.” In a fit of rage, I whirled around raged at my daughter. I remember yelling at her, “Why? Why can’t you be like the other girls?” My daughter cowered in a chair, and there was fear in her eyes. I had broken her trust and crossed over the line. To this day, and even as I write this, I can hardly hold back the tears. That day marked the turning point for my kids and me. I had finally been pushed to my limits and I needed to get control of our lives and of their education. Ironically, that afternoon while I was at work, an older woman, who had raised two daughters, and had twenty years into her sobriety said, “What’s the matter Sunshine you don’t look too well today?” I told her about my morning and how gutted I felt. She said, “Sugar, don’t let no stranger in your house or run your home. Those are your babies and only you know what’s right.”
What action did you take to address the crisis?
I went home that night and I started putting boundaries into place. The teachers and the administrators were told that there would be no emails after Thursday. Nothing can be fixed on a Friday, Saturday or Sunday. I designated one person at the school to be the single point of contact with me. I worked with the tutor and an educational consultant. Both women were credentialed Educational Therapists, and both had raised a child with learning differences. They were my advisors, and could provide me with honest feedback.
I became my own subject matter expert. I understood that everyone was well intentioned, including my former mother-in-law who sent me the book The Price of Privilege. She decided that my children didn’t have learning differences; they were just spoiled and needed a few more spankings. But I needed to silence all of the white noise and the background noise in our lives and focused solely on my children. I knew one thing for certain: if I didn’t invest in my kids, and place all of my attention and resources into them, they would not have a chance at a great life.
Then it occurred to me that I was sort of piecing their therapy and their education together on my own. That’s when I decide to transfer the to a school that specializes in educating children with dyslexia. At the new school they would get all of the services that they needed in one place, develop learning strategies, and learn to self-advocate. It’s was a school in which EVERY teacher had the right training and credentials.
As a single mom living in San Francisco the move to a new school was not an easy decision. I moved back into my childhood home so that I could afford the tuition and the transportation. I became a 40-something year old woman living at home! I downsized every part of my life so that my kids could have the best education that I could provide for them.
What has this journey of parenting kids with learning differences meant to you? How has it transformed you?
Having two children with dyslexia has made me a better person. I have a great deal of respect for everyone’s differences, and I recognize that we all think and function differently. When I am managing a project I let my team function within their skill sets, and I look for strategies that will draw out the best in their work. It has also made me a better strategist and planner with a serious dose of patience.
When it comes to my children, I celebrate all of our successes –big and small. I have learned that the experts don’t have all the answers and sometimes the best decision that you can make is the one that comes from your heart.
What was the best advice you ever got or what is the best advice you’d like to give to other parents facing this journey?
To this day the best words of advice that I got came from my co-worker: “Sugar, don’t let no stranger in your house or run your home. Those are your babies and only you know what’s right.”
This is the part of my story where I get to say that son is a sophomore in high school, plays football, runs track and field, is on the honor role, and attends all of the school’s social functions. My daughter is now a freshman in high school, is a brilliant creative writer, reads at a college freshman level, performs in the school productions and I wouldn’t trade her for any of those “other girls.” But that’s not what matters most - what matters most is that they are happy, self-confident and have a lifelong passion for learning.