Female Midlife Crisis, Special Needs Style

I just woke up from my women’s midlife crisis dream. In this dream, my youngest, perfect child has just started college, I am approaching 50 trim and fit, and I am pondering my next step, trying to decide if I should start a consulting firm, go back for that PhD I’d always wanted, or work overseas. But that was my MORE magazine [“celebrating women 40+”] dream. Then I woke up to hearing “I want two waffles with syrup” uttered twenty times in five minutes by Sayer, my 8-year old son with autism. I thought about how to best convince my 14-year old son, Jacob, that even though an assignment is due Friday he should start on it before Thursday night after watching “The Office.”

I left my midlife crisis dream behind, like the memories of lounging on a tropical beach, and arose to my real midlife crisis. In this scenario, I am approaching 50 with a persistent bulge and the stirrings of night sweats, mood swings and the urgent need for time for JUST ME. Rather than facing an empty nest, I am facing decades of special needs mothering, along with the challenge of shepherding my “typical” high schooler through a demanding magnet program and into college. My husband and I are trying gallantly to keep up with this life, let alone envisioning a fresh, new future.

Midlife as we know it

Unlike women in midlife I see portrayed in the media, none of my “special needs mom” friends who are in their forties or beyond are well-off divorcees sky diving with their second loves or lapsed executives starting charity programs or start-up firms. Instead, we include a single parent struggling to get a community college to accommodate her son with learning disabilities while also caring for her mother with Alzheimer’s, a mother and grandmother negotiating with government agencies to create supported housing and employment for her 21 year-old son with autism, and a mother of a son with Down’s Syndrome who manages a soccer team for children with disabilities.

Older, more exhausted but wiser

Midlife mothers are also different than younger mothers of children with disabilities. You know these moms; maybe you were one (I was) – they are the go-getters in their 20s and 30s who are eagerly trying new miracle cures, organizing advocacy marches, and deciding whether or not to have additional children. These moms seem to have bottomless energy focused on the here and now; they may not be thinking beyond the next therapy to try for their child, let alone how that child will fare in middle school or adulthood.

In midlife, mothers of children with special needs are older and maybe more tired, but in many ways we are wiser. Compared to our younger selves, we have greater confidence in our knowledge of what is best for our children, and are determined to advocate effectively for their needs. We are less embarrassed by our children’s “behavior” and more insistent that they be included in society. Many of us find increased comfort in faith, and have reached a measure of acceptance and peace that eluded us when we were younger.

The goal of this blog is to inform, encourage and inspire women in midlife who are mothering children with special needs, as well as those who love and support them. I hope it will be a forum for mothers to share advice, challenges and triumphs. Please join us.