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Parenting children with disabilities is a lot of work [as Homer would day, d’oh!]. When Sayer was younger, I always felt a bit “robbed” of down time. Neurotypically developing kids ( aka regular ‘ole kids) were usually granted down time to watch television, play video games or whatever, but because Sayer has autism, Dan and I were cautioned against letting Sayer be in his own world> We were advised by educators and therapist not to let Sayer engage in behaviors that are repetitive but soothing - meaning to “just stim.” So instead, we we vigilant and made sure he was nearly always “engaged.” Talk about searching for balance – I would have just settled for time to read one section of the paper with a cup of coffee.
As Sayer got older, we found that the week-end mornings were the toughest part of the week – Sayer was so well-scheduled at school he couldn't’just eat breakfast and hang. He did better when he had a visual schedule laid out for him in the morning that outlined his activities for the day. One more job for Mom. I know I’m not the only “autism mom” that wishes their kid would watch an hour or two of Saturday morning cartoons.
Today, wiser woman that I am, I realize that we can’t be super parents who are “on” all the time. When "regular ole' kids" play Wii for hours on end, ins't that a type of stimming? It is repetitive and pleasurable, but is that so bad? Nowadays, we try to strike a balance between letting Sayer indulge his favorite activities even when they are a tad “stimmy” versus pushing him to try new activities.
For example, Sayer LOVES Wallace and Gromit, particularly the movie “Curse of the Were-Rabbit” [ 85-minutes plus previews, yeah!]. We let him watch it about every other day, sometimes with one of us in the room and sometimes on his own. So far, he hasn't shown any ill effects, except that he likes to repeat one – and only one - phrase from the movie. Unfortunately, that phrase is “shoot the dog.” We are working on getting Sayer to day “Cheese, Gromit, Cheese” or “I do like a bit of Gorgonzola” instead.
Is there ever such a thing as real balance? I woke up in the middle of the night a jolt of anxiety about sending a holiday letter off to friends and relatives that includes this blog address. “What if no one ‘gets it’? But, I’m still working on the format! I liked my first post the best, but I have to keep writing more?”
This blog is an ideal specimen of my struggle with balance – the struggle between fear of baring my soul and my drive to write about myself and women with similar life stories. I’m also trying to find time to write in this blog while also carving time to learn how to blog, add links and so on (“this thing, called code, I just can’t handle it…."). My web 3.0 friend advised me to just start the blog, so I did. In doing so, I’m fighting my natural tendency to master perfection first – you know, get an advanced degree in oceanography before getting my toes wet.
Yesterday, Sayer went to his "OT" appointment; he recently started occupational therapy focused on sensory integration. His therapist handed him information on a listening therapy program. Without a second thought I glanced at it and politely said,"You can give that back to Melissa [not her real name]." I told Melissa that we tried listening therapy in the past and there was no positive impact. She seemed surprised and said "None?" "None," I replied, although later I did think of one - Sayer learned what headphones were and how to use them. Not quite the intended purpose of the intervention.
After I got home I thought about how, as a rookie "autism mom" I listened to the both therapists and other parents and, without much question, tried the interventions they suggested. As time went on and our "failed intervention" basket grew to include not only the listening program but also, among others, the gluten-free/casein free diet, DMG and Handwriting Without Tears, I gradually honed my skills in analyzing a potential intervention and matching it with what is right for my child and my family.
It can take a tough hide to say to a fellow mom, a therapist or an educator, "We don't do those type of interventions" or "we tried that but it didn't work." But, with each passing year doing so becomes easier for me. How about you?
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.
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