DEALING WITH DISABILITIES

When a family member has a disability, it's a journey for everyone...

WHAT ONE FAMILY WENT THROUGH AND WHY I WANT MY STORY TOLD
When I embarked on parenting “LLL style,” I thought that I would end up with happy, loving children. So you can imagine my feelings as my son became increasingly depressed and violent. My husband and I spent years in therapy trying to figure out how we could become better parents for Ethan. We kept thinking that if only we were more patient and invested more time, everything would be better. But things only got worse and worse for him. It affected my other two children as well—their brother’s outbursts were making them upset and angry.

When Ethan, our middle child, was in second grade, a comment from his teacher led me to ask the school to do an evaluation. I think by that point, I knew something was different about him, I just could not put a name to it. The school psychologist, however, made a determination that I remain bitter and angry about to this day. She told us that our son was too attached to me and had psychological problems because he was unable to separate from me. It was these problems, she said, that were making it difficult for him to learn to read and spell in school.

My husband, who was exhausted from all our struggles with this child, started to wonder if maybe she was right. Ethan nursed until he was six, longer than any of my other children.
I, not knowing what to do after she told us this, went home and got into bed and cried. I had learned through LLL not to automatically assume another’s views on parenting were accurate, but we had sought help from so many professionals for our son. Most told us he was fine and that we did not need to worry. Finally there was someone who was agreeing that there was something wrong. I knew she was correct. I knew there was something not right with my son. And so I began to wonder if she was right about the things she said about his attachment as well. Perhaps I had coddled him too much.

After that we pulled my son out of the public school and put him in a small progressive private school. For a while things were better. But then in third grade, things started to get worse again. Our home was nothing like the loving LLL home I had envisioned it would be. At one point, when things became unbearable, I called my neighbor, a well respected psychologist, desperate for help. I was convinced my son needed medication or to be committed.

My neighbor asked if I was comfortable letting her look at the evaluation that the school had done on him in second grade. Although I was ashamed to have her look at this evaluation because of the awful things it said about me as a mother, I was so desperate that I slipped it under her door.

That night at 10 pm she called me and said something that changed our lives. She asked me what the school had told me about our son. When I told her what the school psychologist said, she was shocked. She told me that Ethan, who is extremely bright, had a learning disability that needed to be addressed. She directed me to a neuro-psychologist and told me to schedule my son for more extensive testing.

I was nervous about the testing because Ethan was so miserable about the school testing. But much to my surprise, he came out of the session happy and proud. The woman who was testing him realized that Ethan needed to feel some type of success, so she had Ethan dictate a story to her. Dictating allowed Ethan to focus on the writing without worrying about the spelling and letter formation. It was like giving an injured child a wheel chair and watching his joy as he finally was able to move around independently. He was so proud of his story. He had us read and reread that story to him. It was the first sign that things might turn around for our boy.

At the meeting with the neuropsychologist to talk about our son’s testing, they went over his strengths and weaknesses. As they talked about his weak areas, my husband kept saying, “Hey, Jill and her Dad do that exact same thing.” When we finished the meeting, I asked if there was a name for why Ethan was struggling. I knew it was not ADD, but I wanted a name to go along with all the language processing problems they told me he had. I was amazed when the doctor said, “dyslexia.” I then asked if I might also be dyslexic and was told that most likely my father and I were both dyslexic. “You see, dyslexia runs in families.”

The next year was an improvement over the previous one, but it was still a struggle. Ethan’s teachers refused to accept that this bright boy had a learning disability. They would constantly give him inappropriate work that would frustrate him and make him explode with anger when he got home. He had a team of wonderful tutors and a therapist who helped him, but they had a hard time working with a school that did not want to make adjustments for this child. He also had a lot of difficulty coping with his peers who were leaping ahead of him in many areas.

By then, I was once again confident as a mother and knew to follow my instincts. Although his teachers told us that our son was extremely smart and did not need to attend a school exclusively for dyslexics, I knew that a year or two at a school like that would help build his confidence and take away the anxiety he had developed from years of people not understanding him. Ethan started at the Carroll School in September. It was the right decision. I still can not believe the changes that have occurred in my son so far this year. He is a different child. He is happy, loving and slowly becoming less anxious and more relaxed. My motherly instincts were correct—my son needed to be in a place where everyone understood what it is like to have dyslexia.

As I have learned more about dyslexia, I have also looked back and am beginning to understand many things about my past that never made sense to me. I now understand why my son was so difficult, why he often did not seem to comprehend my directions when he was a toddler, and why he became so frustrated so often. I realize where his fear came from and why Ethan and I struggled to get along using words. And now I also understand my own struggles with writing and forms. I can see why I sometimes misspeak and frustrate those I am talking to.

Today, I am proud of my son and the hard work we’ve put in as a family to solve and work on his issues. Life is still not perfect, but at least we know and understand just what it is that we are coping with.

I recently learned that my LLL Leader, the one who trained me, has been coping with a lot as well. She is a very eloquent and poetic person and wrote the following to me in an email about her daughter’s illness....
“I remember when we were young mothers, we were so careful, so protective, so sure the world would embrace our children. I’ll tell you Jill, I never imagined the kind of pain I have felt for my daughter.” That statement brought tears to my eyes. Yet despite the pain, I’ve come to realize that we also gain an incredible wisdom in difficult times—experience built on a foundation of La Leche League concepts and knowledge.

I believe one of the most important goals for LLL Alumnae is to provide a link between the nurturing we receive in LLL as young mothers and the more complex world that we enter after our children wean. Just like we tell pregnant women to come to an LLL meeting to learn about breastfeeding, mothers of preschoolers, school-age children, teens, young adults, and even grandbabies and grandchildren can benefit so much by the stories of women who have gone before them.
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by Jill Levien, Massachusetts USA
from Continuum, No. 4/2001 ~ No. 1/2002

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