{Note: I wrote most of this article about two and half years ago. I wasn't sure where the story would go back then. Of course, the story is not finished yet, but we're in a better, more confident place now. I hope that you will find this to be a positive message if your children are struggling with any issues, whether mental or physical.}
Lucky.
Lucky is not the word I would have chosen. It's a word that has been thrust upon me by well-intended friends, teachers, even parents of other exceptional children who didn't discover the reason for their children's learning challenges until their kids were older than my son. To me, "Lucky" infers an envious position, something that others long for, like winning the lottery.
No, there are many positive and negative words I might choose to describe our story and position, but I don't think "lucky" is one of them. And yet, over and over, I hear that word. I'm not sure what my expression says when I hear it. I try to politely smile and nod, without saying anything, because I'm not sure what words would come out of my mouth if I tried to describe my feelings about whether we're "lucky" in this journey of educational and life challenges.
Perhaps I should feel lucky; lucky we found a teacher to offer direction, lucky my son was only 7 at the time that we found an answer, lucky we had good resources to turn to, lucky we had the means to figure out a way to pay a private school tuition, lucky it wasn't a terminal disease we were facing, merely learning disabilities, but that's not how I felt.
I felt sad that it had taken 7, almost 8, years to find an answer and nervous about the change to the new school and betrayed by traditional education and worried about using all of our funds we could scrape together to pay for this gargantuan tuition and misunderstood by so many parents and teachers. I wanted to feel lucky. I tried to feel lucky, but the best I could muster was relief.
The Moment of Truth
Oh! How I hated school conferences! And yet, there was nothing to be done except to put a smile on my face and march in. I had tried to dress cute and perky, but not too dressy, the perfect mom; as if somehow the way I looked and acted would make a difference. It started with the customary awkward pleasantries and then the same thing I'd been hearing since his 3 year-old preschool class.
"Carsten is a great kid. I love having him in class. He's creative and funny and sweet and always has great ideas to share and everyone really likes him and clearly he's bright. BUT…."
There was always a BUT. A Huge All-Caps BUT. It was always the same. Carsten was struggling with reading and spelling and math and handwriting and working independently and getting his work done on time in class and failing to test well.
I already knew all of this, and yet I always left completely crushed with tears in my eyes, the blood pounding in my head, looking for an answer and just wanting to run home and hug my son, sheltering him from a world that cannot understand him.
BUT this time, his teacher went a bit further. His second grade teacher was familiar with the behavior she was seeing. Her son was very similar to my son.
For the first time, I was told that my son might have a learning disability. Mrs. T. explained to me exactly what she was seeing happen in class.
She knew he was bright, but the light in his head went dim anytime he was asked to accomplish a lesson on paper or do a task on his own. Somewhere along the way, the messages and directions were getting lost or confused. Mrs. T. suggested that we get an assessment done outside of the public school system.
I was still crushed, and yet, I was also uplifted knowing I had the beginning of an answer. I had really always known there was something going on, but I had no idea of where to start in my search for answers.
How It All Started
My son, my first born, was always very smart and alert. He began talking at 5 months old. He spoke two words then: "Hi" and "duck." We read books to him from the first day he was born. He loved to listen to the books.
He rolled over at 1 week. He began pulling up at 6 months. He walked at 10.5 months. He was interested in everything. By 1 year, he talked and talked and talked. At 18 months, we had detailed conversations with him. He spoke and understood a great deal.
But as he got older he could not identify letters or numbers when others his age were doing this. Holding a crayon or pencil and drawing was difficult and he hated to use writing instruments. He loved his toddler art classes, but rarely ever followed the step by step instructions; making beautiful and amazing abstract art instead.
At age 5, we found out he has severe astigmatisms in both eyes. I thought to myself, "This is why his handwriting and reading have suffered and why he has trouble identifying letters and numbers. He can't see!"
But Carsten continued to be at the bottom of his class when it came to reading, writing and math as he finished kindergarten and then 1st grade and entered 2nd grade.
I was grasping at my limited knowledge of education and learning challenges, trying to figure out how to proceed. What I was sure of was that a traditional public school education was not going to cut it for my son. What I found broke my heart and mended it all at the same time.
Finding Answers
We got the assessment…dyslexia and ADHD along with a superior IQ. We enrolled him at Groves Academy, a private school specializing in nonverbal learning disabilities. It was an amazing, transformative, heart-breaking and inspiring year for many different reasons.
My son started third grade at a first grade reading level and finished at a 4th grade reading level. The curriculum Groves uses, Wilson Reading, is fantastic and really works!
We are in our second year of homeschooling now. This is the direction we decided to take after discovering our second son is also dyslexic and coming to the realization that we could not afford two kids at Groves. We still use Wilson Reading as our reading and spelling curriculum and my older son, now a 5th grader, began this year at a 7th grade reading level, after only 2 years with Wilson Reading. My younger son is making strides and began this year only 1 year behind where he should be based on his grade. He, too, will learn to read and read well. It all just takes time, but we know we're on the right track now.
Knowledge and Connection Equals Power and Hope
I know we are not alone in this journey of searching for a place where both my sons can flourish. I also know how lost and helpless I felt for so long, not knowing where to look or who to confide in. And even once I began to find answers, I couldn't find any similar stories written by other moms in the same boat. I felt that I should share our story, where we came from and what we found and where we are going.
I think this is how moms gain support from each other and feel secure in the directions they take with their kiddos; that is, finding other moms who say, "you are not alone" "we understand" "you're on the right track" "keep advocating for your kid" "you're doing a great job."
And this is precisely my goal in writing this; to connect with other moms experiencing what I am and extend a hand to those who are seeking answers and don't know where to start. I write from the perspective of a mom, not a medical or educational expert, although I happen to think that a mom is a pretty good expert when it comes to her own child. So, in a way, I am writing from the perspective of an expert.
Never doubt yourselves or your child. This is a lesson I had to learn several times. You, too, are an expert. You know what you know, even before assessments and reports and diagnoses. Trust your instincts; have faith in yourself; and fight like hell for your kid.
I think I can finally agree we were lucky in this matter. Over and out…
Anna