We parents of children with severe impairments have a unique parenting journey, and it is not a side gig that can be done casually. It virtually takes up our lives, for years. For me, on some days (months/years), parenting Billy was just too hard. I didn’t see how I could go on. I did it because I had no choice.
It changed me, in good ways and bad. Now that Billy is 28 and a sweet and dear young man, I can look back and think about what happened. Such an intense experience must, by definition, leave a mark. For me I think I am both stronger and more grateful. To have Billy in a stable place, where he is not acting out, is such an amazing gift. That Billy is calm and happy after so many years is something I never expected, and I am vividly aware of how lucky this is. I do not take this new easy life for granted.
I also have some remnants of PTSD. When certain triggers occur, I can feel my stress go through the roof. This seems to be decreasing through the years, but it is still there.
In his wonderful book on parenting special children, Far From the Tree, https://www.amazon.com/Far-Tree-Parents-Children-Identity/dp/0743236726 Andrew Solomon explains that having a severely disabled child intensifies life. We go from the depths of despair to feelings of great joy that are all out of proportion. This is no ordinary life we have led.
Solomon describes how some parents of profoundly disabled children grow stronger and more resilient, for those that allow that to happen:
“It takes an act of will to grow from loss: the disruption provides the opportunity for growth, not the growth itself. Constant high levels of stress may age parents of profoundly disabled children, making them crankier and more vulnerable, yet some cultivate a deep and abiding resilience. It turns out they have grown more skilled at handling other life stresses. Even as the downside wears you thin, the upside keeps on giving. The more difficult the problem, the more profound these positives may be.”
This growth doesn’t necessarily happen with milder cases, he explains:
“Mothers reporting higher levels of caregiving demands for their child with intellectual disability also reported more personal growth and maturity,” the Canadian scholar Dick Sobsey, himself the father of a disabled child, and his colleague Kate Scorgic write. “Parents of children with relatively mild disabilities may be more likely to adjust or accommodate by making minor or superficial changes. Conversely, parents of children with more severe disabilities may find it more difficult or impossible to go on with their lives as before and, as a result, may be more likely to undergo transformations.”
As I often see with my clients, what doesn’t kill you makes you stronger. If you would like to share your insights into how your parenting journey has changed you, for better or worse, please email me at Karen@Mariscallaw.com.
I really enjoyed your book review