I have spent more than two decades holding the hands of numerous parents as they were forced to recognize and then accept that their biggest fears have come true. I help them face their new realities: Their children have special needs, their children are ill, or their children will have to struggle to get through even those most basic tasks of daily living.
A parent has gut instincts about when her child is in need. A parent instinctively responds to meet that need. What parent wants to hear, let alone accept, that her child has a developmental delay or a diagnosis that will impact his ability to grow up with ease?
It is true that some parents refuse to see what is right in front of them. They gloss over the signs, they deny the truth. When these parents work in fields that require they be experts in child development or health and wellness, we assume they “know better.” We assume that they can see the signs, but they refuse to acknowledge them. I know this to be true because, I am that parent.
I pulled the wool over my eyes regarding the special needs of each of my children at least once. When my first daughter was three, her aunt watched her while my husband and I went on a long weekend respite in Chicago. After two days, she called worried about Maddie. She reported that her “face looked funny.”
I, too, had noticed that Maddie had acquired a lopsided smile but attributed it to her purposefully making a funny face. My sister-in-law doubted this and tried to express her deep concern. I dismissed what I characterized as her well-intended overreaction. I returned to my weekend of fun with friends.
When we picked Maddie up, I noticed that her face drooped. Nevertheless, I refused to admit it was a medical problem. Once home, my husband spoke up, wondering if we should be worried. I, a big headed egotistical fool, said, “I’m a speech language pathologist. If something was wrong with her face, I would know!” My husband quietly turned away, no doubt seething at my smugness.
As I drove to work the next day, I was suddenly overcome with worry. My intelligent mind overtook my emotional mommy brain, and, in an instant, I knew she had acquired Bell’s Palsy. It was the only logical explanation. I called my husband apologetically and begged him to take her to the pediatrician.
Steroids and MRIs followed. It took weeks, even years for her to fully recover. Had I allowed myself to really see what was happening and sought treatment earlier, she probably would have had a speedier recovery. I had to admit that I’d become that parent who grapples between what the heart can truly accept and what knowledge and experience knows to be true.
This became even more evident with my second child. With her I knew her genetic history set her up for a myriad of potential issues that could cause atypical development. I became proactive, enlisting an army of professionals from the moment we brought her home at six months old to assess and support her.
We insisted the otolaryngologist place tubes in her ears to alleviate her ear infections. We had a physical therapist help her learn to roll, sit, stand, cruise, and walk. We obtained behavioral specialists’ help to regulate her erratic behaviors and emotional responses.
The protocol for maintaining all of her early intervention required constant reassessments to justify services. I was open to all their input until the label to which I was most resistant popped up in the conversation. They wanted to place her on the autism spectrum (ASD).
The years in between then and now have been rocky, but manageable. Her speech therapy services facilitated her reading and language comprehension. Her guidance counselors and teachers supported her through her daily battles with anxiety. Her medical doctors listened and supported in a myriad of ways. I never saw the autism.
Now that she is a nearly a teen and her body is evolving and developing, the signs that can be attributed with ASD are becoming more evident. Before it was just quirkiness, but now it is impacting her learning and her social skills. I now recognize the sensory processing issues I ignored. My heart breaks as I watch her try to navigate things that her peers seemingly breeze through.
I spent every workday over the last two decades teaching families on how to recognize the signs of autism, how to address the sensory needs of their children, how to support the social interactions of their young ones, but I let my own daughter’s true needs elude me. I didn’t ignore all her needs, we just didn’t address the elephant in the room. She may have ASD.
So here I sit beside my husband parenting a young woman who wonders why life is so hard for her. I continue to consult experts to discover how her unique brain and body work to help her be successful in all areas of her life. As I drive her from appointment to appointment, it seems I will do anything for her. Well almost anything – I continue to dodge that scary ASD diagnosis. I am that parent.
It takes a village!
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