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Our Story If you are perusing this page then you are interested in the topic of nonverbal learning disabilities. Maybe your child, relative, friend, student or perhaps you have a diagnosis of NLD. To acquire this diagnosis, the person has completed hours of testing, observation, received second and third opinions and has been “formally” given the diagnosis; Nonverbal Learning Disability. You are asking yourself, now what? I am sure, like us, you’ve searched the internet, purchased as many NLD books as you could get your hands on and have studied the “big picture”. It is impossible to find a clear cut definition of NLD. As Byron P. Rourke says, “If you’ve seen one person with NLD you’ve only seen one person with NLD”. Varying levels of abilities mean the person diagnosed may not “fit” every aspect of the NLD “definition” to an equal degree. Because NLD (or right hemisphere dysfunction) is a neurodevelopmental disorder or a neurological impairment it affects a number of the person’s abilities. Trying to dissect all of the information given to you by the “experts” can be overwhelming and alarming. We have stood and continue to stand in your shoes as the parents of a child with NLD. We offer you our journey with the hope it will provide you even one speck of useable information, comfort, and the very least the sense that you are not alone with your NLD loved one. Parenting a child with challenges doesn’t have a beginning or an end. You wake up one day just being…being a mom or a dad like every other mom or dad you know. I’ve tried to retrace my steps from conception to birth trying to pinpoint what I didn’t do or did do. What could have affected my baby this way? I spent many sleepless nights wondering, worrying, and praying for an answer to that question. Emily was born in 1995. Complications would best describe my pregnancy; physical and emotional complications. The doctor thought it best to induce Emily and so Pitocin, a spinal tap and six hours later there she was; a truly joyous moment! Later that night, when the visitors had departed, she and I were left alone to gaze at each other. I had an overwhelming feeling that “something wasn’t right”. Mothers generally know best and my mother is no different! She held Emily moments after she was born and said, “There is something wrong with the baby”. Emily looked all right I kept telling myself yet, I knew in my heart that something was very different about her. My older children entered this world with such exuberance, legs and arms flailing but not Emily. I asked the doctor the next morning why my baby didn’t cry, was hesitant to move, why she covered her ears when she heard sounds. I received the response every parent wants to hear, “she’s fine”. I know that babies are traumatized during birth so I told myself that maybe Emily needed some time to recover. I spent months trying to convince myself that I was imaging she didn’t seem “right’. My mother continued to validate my intuition and encouraged me to search for answers and so at ten months old our quest began. I am told that more often than not diagnoses are never obtained for “exceptional” children. Parents and children learn to cohabitate with their symptoms. I was told Emily “is a mystery” more times than I can remember from doctors. We continued to search armed with years’ worth of tests and data centered on “our little mystery”. Each specialist understood their separate piece but not one could put the pieces together. It was true; Emily was a mystery … a little jigsaw puzzle. Emily’s challenges were abundant. I have condensed her list to include:
We literally stumbled into information about Nonverbal Learning Disabilities. One day, Emily’s god-mother was helping to analyze the results of her educational testing and questioned the large deficit between her verbal and performance IQ and several glaring deficits in other assessments she had completed. She said that she had taught a child with NLD and had any of the doctors mentioned this to us. Immediately, we began researching NLD. The characteristics of NLD were so much like our child it was as if we were reading a description of her specifically. One publication discussed that when young children with NLD learn to walk they often walk as “if drunk” – the words “walks as if drunk” were written in a doctor’s report from Dartmouth seven years prior about Emily. We made several appointments with the scores of professionals needed to accurately diagnose this disability. All concurred. Due to this fluke conversation, (we’re forever grateful to Karen) Emily’s challenges finally had a name, Nonverbal Learning Disability. A great relief came with finally knowing what was “wrong” and we immediately moved into the “let’s fix it” mode. The discovery was bittersweet. Accepting that we can not “fix it” for her and that there is no “cure” has been difficult to say the least. We have learned the diagnosis provides a point of reference for appropriate interventions. We’ve learned that it is the unspoken, “little” things are what we need to explicitly teach and ultimately matter the most to our child. The original intention of writing this “Our Story” segment was to afford you, the reader, the ability to relate to or draw from our experience, our puzzle. I now realize that this goal can be best achieved through documenting our discoveries as they present themselves. So, this portion is unfinished. Check back as we update and share more of our journey with you. |
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