The disappointment of having a child who is different

My third child was the easiest baby ever. She slept through the night at two weeks of age and breastfed eagerly until she turned one. Laura was a chubby, cheerful toddler with bright green eyes and sandy blonde ringlets. Whenever possible, she chased her older siblings around and attempted to do everything they did. Her older siblings and the neighborhood girls doted over her. She was everyone’s baby, with the nickname, “Baby Wawa,” because of the way she pronounced her own name.

At age four, she demonstrated no interest in books like her older siblings did. She had trouble learning shapes, letters, and numbers. One day, I watched her quietly looking at a book by herself, happily turning the pages, and noticed that the book was upside down! That was my first glaring clue and afterward there was no denying the problem. The school sent home some laminated phonics flip cards for practice learning rhyming words, like “hop,” “bop,” and “pop” or “bad,” “sad,” “dad,” but she could not work them. Rhyming words defied her. She perceived lowercase b’s as d’s or p’s, and she mixed-up many other letters. In her young mind, letters and their sounds simply did not connect. She noticeably struggled to learn new words and her speech development was delayed as well.

My reaction to this situation was to shift into supermom overdrive. I typically try to control unusual situations with extra knowledge, so I scoured papers, interrogated experts, and scheduled appointments to assess her speech, hearing, and vision. The testing revealed that her hearing was fine. We knew that her speech was delayed but the audiologist told me that it was “within the range of developmental norms.” We were told that she did not have an auditory perceptive disorder, as some dyslexic children do. Her vision tested normal as well.

At the recommendation of one veteran teacher, I carted her off to see a dyslexia “doctor,” an optometrist, who fitted her for reading glasses. These glasses essentially magnified the words — just like bifocals. I felt duped into buying those special glasses, but Laura was happy to wear the pretty, rainbow-colored frames she chose. It pleased me that the glasses made her feel special.

Thankfully, she had no trouble interacting with her peers. She played well with others and her gross motor skills seemed normal. However, her fine motor skills were wanting, and that caused her trouble with writing. Still bargaining, I wanted more information and decided to have her learning disability formally tested. I felt reassured to learn that while dyslexia impacts learning, it is generally not a problem of intelligence.

The comprehensive testing showed that her intellect was above average, but because of her dyslexia she scored two years behind in development. I was disheartened to hear that news. By five years of age, Laura was coping better and capable of doing most kindergarten work. However, her concept of numbers and math was inferior to the one she had for letters, words, and reading. Moreover, telling time remained elusive to her.

Laura was born a healthy full-term baby. My pregnancy was normal, and she had no problems in the nursery. I floundered to explain her dyslexia and learning disabilities. I knew that the premature infants I cared for and discharged home from the hospital were at unusually high risk for learning disabilities. In fact, the smallest babies had the highest risk. So, I was troubled about what caused Laura’s brain to develop in this atypical way. No one could explain it to me, nor could I determine a cause from all my reading about dyslexia. Some part of me felt that it might be my fault. Another part of me was just plain disappointed. My older two children were eager learners, and I never imagined having a child who was not.

Laura learned to cope throughout elementary school, but she always labored to learn. We rehearsed spelling and we practiced writing. When I helped her with spelling, I had to give in to her technique of memorizing each word rather than sounding it out. I always felt unhappy watching her work twice as hard as her siblings to learn something new. Many times, she came home from school, with tears streaming down her cheeks, complaining, “I’m stupid,” and it broke my heart each time. I told her that she was not stupid, but that her brain was just wired differently. That became our mantra: “Your brain is just wired differently.” She had done nothing to deserve her situation, and even though I believed our mantra, learning to accept her situation over the years was not easy.

Now my story is nothing like one that could be told by the mother of a child with Down Syndrome, cerebral palsy, or a major disability. Those moms know deep disappointment, and they must work much harder than I did to help their children learn every day. Yet, their knowing greater disappointments and meeting tougher challenges does not lessen my feelings — or yours, if you have a child who is different.

We all imagine what our children will become when they are babies. And we actively think about how we wish them to be. When our expectations do not match their reality that creates disappointment. Our adjustment to having a child who is different is perhaps a subdued process of grief: We progress from anger (or controlling) to denial, then bargaining, later depression, and finally acceptance of their capabilities. Our response to this disappointment is a necessary process that helps us to fully accept our children for who they are. It is only in this way that we grow into being a good enough mothers for a child who is truly different.