Discovering Learning Disabilities?
When my daughter Allegra was in her second year of kindergarten, the school principal school suggested that I have her evaluated for “learning problems”. Learning problems did not sound like a particularly serious issue to me. I thought the term might indicate a problem with attention span, or maybe a short lag in reading abilities. When the principal then hinted that Allegra might have trouble in a regular classroom, my internal alarm bells began to clang – not loudly, but with a definite steady beat. “What did she mean by that?” I wondered. Rather than wallow in uncertainty, I decided to get some answers from someone who, at that time, was regarded as the top pediatric neurologist in New York City.
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The doctor sent Allegra to his assistant for the evaluation. The next day, I sat in his office while he looked over the reports spread out on his shiny mahogany desk. There was no small talk, no pleasant chit-chat. He said nothing until he looked up at me and in a cold, professional voice said, “From these results it is clear that your daughter is severely mentally retarded.” Before that could sink in, before the alarm bells could even begin their eventual, deafening clatter, he continued, “and I feel that the best thing for you, for your daughter and for your family is to institutionalize her.” He then told me that he knew of an appropriate facility outside of London that would take my five year old daughter, and though he wished he could be of further help, he was “just too busy.”
Clang, clang, clang – alarm bells rang so loud I could hear nothing else, I could think of nothing else. I walked back to my apartment, stunned and unable to truly process the information I had just received. She was five! As far as I (or anyone else) was concerned, she was a happy, healthy, vibrant little girl. Institutionalized! Impossible.
We give the professionals so much power. We trust them. We believe they are using their hard-won knowledge to guide us onto the right pathways. Part of me couldn’t help believing him: he was the “most highly-regarded” after all. But a larger part of me rebelled and knew at once that I would never follow his suggestions. I would not even accept them. As it turned out, I was right in this, and he was horribly wrong about everything – about Allegra’s diagnosis, her treatment, and most of all, the course of her future.
That day has remained with me for many years. It became a turning point in my life. I walked into that office as an innocent young mother with no clear goals for my life. I walked out of that office as an advocate, though I didn’t know it at the time. Back then I was a quivering, panicked young woman, certain that one her two precious children’s future was suddenly threatened by things she didn’t understand. I saw no way out. I saw no help on the horizon. I had no one I could turn to. My family wouldn’t understand, I was sure of it. My friends had troubles of their own. And professionals? Well, I had just seen where that led – I did not know how to get out of this trouble, and yet, I knew I had to get out. I had to get Allegra out. I had to help her, no matter what, no matter how, so day by day, sometimes hour by hour, I slowly began to reach out for help – tentative and unsure, at first, and later with much more confidence.
I talked to family members and they were much more supportive and understanding than I expected. Friends came along to lighten the burden. I found other professionals who were far less traumatic and far more helpful. Eventually I found the sturdiest, most irreplaceable source of support of all: other mothers of children with special needs. All of them had experienced a similar journey from fear to advocacy.
Advocacy is not usually something we choose in our life. Often it is thrust upon us, and sometimes it happens in dreadful, alarm-filled ways. We are moving along, happy in our role as “Mom,” confident that nothing lies before us but sunny days and open roads – and then, as a friend of mine once said, “you feel like someone has suddenly put a gun to your head and forced you off the highway onto a dark and lonely road.” That dark and lonely road is often the first exit on the road to Advocacy, and many of us – most of us – cannot get there without first going through those rough, dark, isolated stretches. I heard this recently: “When you climb a mountain, you hope to find rocky places and rough spots. If the mountain was completely smooth you could not climb higher.”
Our lives are like that, aren’t they? The trials and troubles we face may seem as daunting as a high cliff, but if everything we did was smooth as silk, we would forever remain on the low ground and never reach the heights. If you have a child with special needs, accept the situation. Do not let it weigh you down. Begin to think of yourself as a special mother. You will have bad days, you will have terrible days, but you can get through them. You will get through them, and by doing so, you will give your child the best chance possible for a happier, brighter future.
Eventually you can look back and see what you have come through, and where you have been. When you do, I hope you will take a moment to pause and reflect and say to yourself, “You know what? I really am a special mother.”
Anne Ford is the author of several books for parents of children with learning disabilities. Her newest book is A Special Mother: Getting Through the Early Days of a Child’s Diagnosis of Learning Disabilities and Related Disorders, published by Newmarket Press, available wherever books are sold. More information can be found at www.ld.org/aspecialmother
By:
Lori Gersh Weiner, Author, Etiquette and Executive Coach.
Dr. Jodi Stoner, Author/Psychotherapist/Etiquette Expert
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