August 8, 2016
Involved parents know their children. They feel their kids’ plights even when the children don’t use words to convey problems. Like sensitive barometers, moms and dads feel changes in their progeny and use their intellect and intuition as guides for action.
When my S-Bear failed to crawl as an infant, doctors showed little concern. Children develop at different rates, and she was meeting all of her other milestones, they said. Even in my inexperience, I had a feeling they were wrong. I read everything I could, and before her first birthday, neurologists determined my beautiful girl had Cerebral Palsy.
Since her diagnosis, she’s endured countless surgeries to help her walk, attended hours of therapies to best use her body, and suffered some severe trauma. I stay with and support her every step of this convoluted journey.
Her C.P. manifests with some cognitive difficulties, and for years, I’ve noticed certain troubling traits. Transitions and changes in routine cause my girl to melt down. Her sensitivity to sounds, textures, and bright lights lead me to be careful about her clothing, hairstyles, and outings. To soothe herself, she rocks back and forth, twirls her hair, mouths things, and perseverates. Music and repetition calms her. Several therapists asked if she had an autism diagnosis. She didn’t, and when I asked her specialists, they all said S-Bear had other issues but did not fall on the autism spectrum.
Still, as I read about autism and its treatments, I recognized so many traits in common with my young lady. When I talked with other parents whose kids fell on the spectrum, I identified with their children’s struggles. I used treatments suggested for the autistic when helping my girl with her struggles.
Recently, I attended another of the hundreds of appointments for my kiddo. The psychologist asked, “Why doesn’t she have an autism diagnosis? After all, if it walks like a duck and quacks like a duck, it might be best to name it a duck.” An amused grin stretched my lips. Only last year, this very doctor told me my girl did not have autism.
I don’t know if this new diagnosis will help my young lady as we seek treatments for her, but it is validating to have my suspicions confirmed.
To all parents who advocate for their loved ones, pay attention to your instincts. Sometimes, even if yours is the only voice espousing a belief, yours is an informed position. You approach your loved one’s care from a love-filled, whole-person understanding, whereas even the most informed doctors only know bits and pieces of their patients. Never give up, advocates. Your instincts are a gift and protection for your precious loved ones.
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