Big thanks to Kay Marner and Adrienne Bashista for organizing this blog and for editing and publishing the Easy to Love, Hard to Raise anthology. I’m honored to be a part of it.
I am Lorraine Wilde and I have been blogging about my writing journey at One Writer’s World from the Pacific Northwest since 2009. I often use my writing as a way to process my feelings about my children’s disorders.
I’ve known since my twins were 18-months old that they weren’t typical. The signs were there earlier, but denial has been a long-term friend of mine.
A fellow mom in Baby-and-Me class helped me realize my children struggle with Sensory Processing Disorder (also known as Sensory Integration Disorder). Sensory Processing Disorder is a neurological disorder causing difficulties with taking in, processing, and responding to sensory information about the environment and from within the body (visual, auditory, tactile, olfaction, gustatory, vestibular and proprioception).
Assessments during preschool led me to consider Asperger Syndrome, but it turns out getting a firm diagnosis was cumbersome and elusive. I’m a scientist, so I tend to approach everything that way. I read every book my public library had on Asperger’s. One book helped me discover that my boys suffer from a metabolic disorder called pyroluria. Pyroluria is a blood disorder where an unnecessary byproduct, kryptopyrrole, is formed during the manufacture of hemoglobin, a constituent of red blood cells. Kryptopyrroles floating around can result in a whole host of symptoms, many of which are shared with Asperger’s and other disorders.
I felt immediate guilt when I realized that my children had inherited this disorder from me. I was dismayed that I’d been living my whole life undiagnosed. I also have Sensory Processing issues and pyroluria, but I never knew what to call it. I knew I wasn’t typical and I’d made a very long list of my “character flaws” that needed work, but I never considered there was an actual explanation for it.
Because my twins are now only seven, they don’t yet understand their disorders, and every day I am thankful for that. The time will come soon enough, and I don’t look forward to the day I must explain it to them. I’m hoping that next week’s episode of the TV show Parenthood, where parents Adam and Kristina will be explaining to their 11-year-old that he has Asperger’s, will give me ideas on how I will broach the subject someday.
One of the hardest parts for me has been letting go of my hopes for a typical, boring life; accepting that my children probably won’t be the most popular kids in school; accepting that they might have to struggle for their whole lives with these disorders.
But discovering that I’ve been living with these disorders has also helped me realize that my kids will be okay, because I’m okay. I’ve had a productive career and while relationships are a continual struggle for me, I have many friends, all without the behavioral interventions, therapies, and accommodations from which my children are now benefiting. My road was bumpy, but I survived it with joy and hopefulness, and so will they.
I’ll be blogging again next week about my hesitation to start the latest therapy, the Wilbarger Brushing Technique, that will hopefully lessen my son’s tactile sensitivity, specifically an aversion to rain on his skin, which can be tough to live with in the not-so-sunny Pacific Northwest.
Lorraine Wilde is a freelance journalist and environmental scientist. She posts regularly on her blog and has published articles at the parenting website www.Neighborhood-Kids.com. Lorraine is writing her memoir, Egg Mama: An Egg Donor and Her Extraordinary Family.