Any mother with a special needs child will recognize that that we have our own special brand of anxiety. A lot of this anxiety comes from social systems—medical, educational, employment—which are usually not welcoming to our children. Most of us find ourselves becoming full-time advocates, forever explaining the extra resources it takes—financial, emotional, physical, intellectual, did I mention financial? —to raise a child whose needs differ from those of more “mainstream” kids. The amount of paperwork and phone calls and meetings generated by advocating for one special needs child is staggering. My to do lists have to do lists! In addition to being advocates, we are also moms, often to more than one child, and usually employed outside the home. Writing this, it makes perfect sense that I am frequently overwhelmed by [dis]organizational anxiety!
In addition to the stresses of advocacy and navigating bureaucracies, moms of special needs kids also spend a lot of time talking to people who believe themselves experts on our children. Even when these “experts” mean well, their advice often contains expectations that are more than any one family or person can meet. As a result, part of our particular anxiety is that we are not enough—that no matter what we do, we will never be the mothers that our children need to help them thrive in the world.
Anxiety Sisters already tend to look at ourselves with ridiculously critical eyes, and, when we have children with special needs, we spend a lot of time chastising ourselves for what we don’t/can’t do instead of congratulating ourselves for what we are able to accomplish on behalf of our children. This, in turn, leaves us frustrated, depleted, anxious, and, sometimes, hopeless and depressed.
At a recent gathering of Autism moms, I noticed how quickly the conversation moved from how we were helping our kids be successful to all the ways were failing them. One mom who had recently relocated her family in order to get better services for her autistic son, lamented that if she could follow a schedule in a more consistent way, she would be a better parent. Another mom pointed out that, despite years of trying, she was never able to get her son to bed at a consistent time. I added that my disorganization was clearly not a good model for my son with executive functioning issues. Sadly, I could give you several more snippets of conversations from that day, all variations on the theme of “I’m not doing/being enough.” And this focus on shortcomings is not unusual for moms with special needs kids.
After the event, I kept thinking about these mothers and how exceptional I thought they were: they were smart and warm and committed and caring and had done extraordinary things for their children. Really, I was so impressed with all of them. And then I realized that I was one of them too.
For many Anxiety Sisters including me, a big part of the anxiety they experience comes from the deeply-rooted belief that they should be more. We have trouble giving ourselves credit for what we do right, and instead focus on what we do wrong. Our inner voices, often internalizing societal pressures, expect perfection, and that pressure creates a relentless performance anxiety, which then piles on top of all the other anxieties moms have about the health and well-being of their children.
I can’t do much about the financial and bureaucratic anxieties I feel as a mom of a special needs child. But I can try to lessen this performance anxiety by reframing my perception of my parenting skills. I have to start reminding myself that I am enough.
As mothers of kids with extraordinary challenges, we know that there is beauty in imperfection and that there is always room for growth—with gentle and loving care. Perhaps, we could give ourselves some of that care and realize that, like our wonderful children, we are a perfect work in progress.