No one’s life is typical, right? During my childhood, people often threw out the word “normal” as if it delivered an automatic understanding among comrades. I grew up believing such a phenomenon as “normal” actually existed somewhere, but I didn’t dwell in its land. As an adult with a bit more life experience, I see all too clearly that “normal” is a misnomer; we really should use the word “typical” instead. “Typical” doesn’t imply normalcy, which doesn’t truly exist; instead, it is based on a normative, statistical scale where most people reside. Any “outliers” from the scale are just atypical, or different.
Jennifer Shaw’s book, Life Not Typical, explores the multifaceted dimensions of parenting children with special needs; specifically, she discovered her youngest child, Toby, had Sensory Processing Disorder. Her book, a memoir, showcases her family’s journey in intuiting Toby’s differences when he was a toddler to finally receiving a diagnosis when he was still young enough to respond positively to treatment through occupational therapy.
Shaw’s book resonated with me on multiple levels, most notably because I had Felicity in my mind and on my heart during the entire read. I couldn’t stop thinking about how much her needs have often been put on the backburner in our family due to Sarah’s more immediate, demanding medical needs. But the more I read from Shaw, the more I realized that it’s time to resume the proactive pursuant of finding the appropriate treatment for her anxieties.
People – as in medical experts – like to tell my husband and me that she’s just acting her age or she’ll grow out of it. Hearing this ad nauseum can be incredibly discouraging, but I found a source of light in Shaw’s book, mainly because she shares how specifically God provided for her family during the darkest, most difficult of times – moments of uncertainty, periods of complete hopelessness. I have been there. I am still there. Yet Shaw reminds us all that God is still there in our darkest moments.
Here are some highlights from Life Not Typical that especially lingered with me, even brought me to tears:
The truth is, that for parents of special needs kids, there are no days off (p. 128).
In reading this, I was flooded with the relief that there are, indeed, a plethora of other parents out there who understand this, and I am not alone. Most days I feel very isolated and lonely in our journey with two daughters who have unique special needs, but Shaw truly gets the gravity of raising kids who are challenged in some way. It was a huge relief to me to feel connected, in however miniscule a manner, to another mom who has lived the difficult life of having a child with SPD.
Call him whatever you need to call him to get him help. I know people do not want to label their children. They are afraid of what others will think or how they will react to their child because of the label. But what people seem to miss is that their child will be labeled one way or another no matter what they do. You can choose to give their teachers a label such as ‘SPD’ or ‘speech delayed’ that helps the teacher to understand your child’s behavior…or you can ignore it and wait until they are labeled as ‘aloof,’ ‘uncooperative,’ ‘unintelligent,’ ‘unfriendly,’ ‘out of control,’ or ‘difficult.’
…when children are young, they don’t know they have a label…Why would I choose to reject this label now, when accepting it would get Toby the help he needed and possibly free him of a label later? My choosing whether or not to acknowledge that Toby had issues did not change the fact that they were there (p. 138).
Here is another excerpt that really struck me, because I have actually had many conversations with parents or single friends who erroneously believed that I was just looking for something to be wrong with Felicity. There were snide comments and off-color jokes that rendered me speechless out of a sense of shame and guilt. All too often, I heard that labeling Felicity was harmful and would only limit her according to her classified diagnosis. Somehow, my mommy gut told me otherwise, and I am so grateful that Shaw articulated the case for finding a diagnosis in the manner she did. It was like breathing a sigh of relief to me.
All-in-all, Shaw does a fantastic job of telling her story while weaving helpful information and resources for parents in her book. Particularly helpful were the appendices that included diagrams and a foundational overview of SPD, as well as a few interviews with professionals who understand SPD.
Even parents who have children with other diagnoses and differences will find Shaw’s book refreshing and relevant to their own journeys. Her strong, unwavering faith in God and the often miraculous ways in which He paves the way for her new-found ministry adds a ray of hope to grieving parents who struggle with their children who have special needs. Shaw is a beacon of light and hope, and her message is universal, especially through her gifted voice.
So I leave you with her music video that spoke to me – as a mom, a mom of a child with SPD and a child with a genetic syndrome. May it inspire you and reach the deep recesses of your heart and soul the same way it did for me:
Copyright 2015 Jeannie Ewing