Mind the Gap

“What doesn’t kill you makes you stronger,” is a go-to saying in the special needs parenting community, something we say to each other at particularly difficult times when there’s nothing else to say, right up there with “Keep calm and eat this cupcake,” or “Can I refill that wine glass for you?”

At its essence, the phrase is true. In life we all need to make some effort if our muscles, mind, heart and soul are to grow. That’s what gyms, schools, and junior high dances are for. Waking up one morning and realizing that we have grown much stronger than our old self is a beautiful moment, one to be savored.

Unfortunately what the person saying the saying doesn’t always acknowledge is that sometimes, the “what” in the given situation actually can kill you. Or make you want to die. Or harmfully self-medicate. Or just simply disengage/avoid/deny, as was the case for me for several years. (Yes, years.) The effort required for the task is so great that we literally die trying, pass out from the effort, or don’t even bother starting. There’s a reason that there are training plans called “Couch to 5K” and not “Couch to Olympic marathon.”

Which brings me to my theory about what I call the Gap. On one side is you — with your skills, your strengths, your resilience, your smarts, your capacity. On the other side is what life throws at you — work, relationship needs, illness, a bad economy, whatever. The distance (actual or perceived) between what you can do and what life needs you to do is the Gap. A little gap will make you stronger. A big gap will kill you.

When parenting a child with special needs, the gap can be bigger than expected: more to learn about your child’s illness or treatments, higher costs or lower income, less sleep or time for exercise, less support and connection with family and friends and more expertise needed to navigate a complicated system. Obviously, making the gap smaller is important for our survival and happiness.

If we want to narrow that gap, we can do so by changing: 1. what we are capable of or 2. what the environment requires of us. It’s a lot easier to change ourselves than to change everyone else, so most parents of kids with special needs start with this side of the equation with things like:

• making getting more sleep a priority
• exercising
• eating more nourishing foods
• meditating, journaling or another spiritual practice
• becoming educated about their child’s illness or disability and treatment options
• learning to navigate the system
• investing time in organizing information or routines
• connecting with other families with a similar illness or disability or navigate the same system
• getting support from a counselor, social worker or therapist or taking time to do the “inner work” of special needs parenting
• making time to have fun or be creative

If we’re fortunate, we have angels in our lives who bolster up that side of things too–taking care of our kids so we can make a call or go to an appointment, dropping off a meal when we’re in crisis, listening when we need an ear or helping us to remember to play.

Over time, we just might find that we do in fact feel stronger. That’s a wonderful feeling. When facing a new huge Gap in the future, there’s a certain confidence that we can close that one too. Often though, it occurs to us that we wish others didn’t have to face quite the extreme Gap that we did. So we start working it from the other end by helping to change the environment by doing things like:

• raising awareness and creating forums to make it easier for others to find support and information
• participating in research to improve knowledge and treatments
• advocating for policy and legislation that make life easier, like improving health care access, more family-friendly work policies, legislation for issues that affect people with disabilities and their families
• contributing time or money to organizations that help others to increase their skills and capacity
• getting involved in systems change

What does your Gap look like? How have you become stronger? What are some ways you’re growing your capacity or lessening the burden of the environment to close the Gap?