Having your own life
Despite caring for your special needs child.
by Nancy J. Whiteman and Linda Roan-Yager

PARENTGUIDE News June 2007

As parents of children with special needs ourselves, we know how difficult it can be to maintain a sense of joy and balance in our lives. Our children’s needs can be so pressing and all consuming that it seems like our only choice is to put our own life aside and focus on what we can do to help them. We do it with love, but over time, many of us also feel a gnawing sense of resentment, perhaps tinged with guilt. What happened to our lives, our dreams and our plans? Are we selfish to even be thinking this way when our children need us so much?

How exactly do we begin to reclaim our lives? The first part of the answer is deceptively simple— you have to decide that you must have it. Many of the parents we work with respond with something like, “Of course I want a joyful life! But how?” We have found, however, that wanting something is not the same as setting your intention to have it. As one Mom we know commented, “I made a conscious decision that I was going to transcend this. I said to myself, ‘My child’s needs are not going to ruin my life. In fact, I’m going to have an enviable life.’” She set an intention to have a great life for herself, not at the expense of her child but with her child. She also shared her intention with other people and elicited their support in helping her make the adjustments in her life that were needed to regain a sense of balance.

Intention, however, while a crucial starting point, is not enough to get the job done. One of the things we’ve seen time and again in parents who are consumed by their children’s needs, is that they often begin to lose a sense of their own separate identity. If you are a member of an online support group, for example, you may have noticed the number of people who choose screen names such as “ryansmom.” Another clue— conversation with out-of-balance parents— no matter what the topic— tends to drift back to their children, the latest treatment, or the newest problem with the school or medical professionals.

Resilient parents, on the other hand, don’t let themselves go away. They remember what makes them happy and what gives them joy. They have plans for their lives and can articulate their own goals. In short, they honor the fact that they are still separate people, no matter how much their children need them. Of course, we are not talking about the type of self-focus that says “It’s all about me!” We are talking about balance that enables a joyful attitude toward life and provides a sense of perspective about your situation.

What is their secret? Many parents found that this sometimes can be as simple as resuming activities that give them pleasure. Whether it’s playing sports, playing music, having a night out with friends or just having some time alone to read a book or take a long, hot bath—whatever gives you pleasure and relieves stress— is a positive way to begin the journey back to yourself.

However, many parents we know find that they need to do even more to regain a sense of balance in their lives. We encourage people to think about where their energy is going today and where they would like to see it going in the future. And, beyond the sheer amount of time spent on various activities, also think about the quality of the time you are spending. Do you make a “date” with your spouse only to spend the entire dinner talking about your child? Or perhaps you find that you spend a lot of time on things other people might consider undesirable tasks but you happen to enjoy them. (We have a friend who loves to polish silverware!) It’s not just what you do but the energy you bring to the activity.

Once you have a sense of how you would like your life to look, begin to develop a specific plan of how you can move toward your goal. Are there things you could cut back on or even drop? Where can you squeeze in more time for the things that you love? And, don’t forget to think about the people in your life that can support you in making these changes.

Remember that meaningful changes don’t have to be huge. Small incremental changes can contribute to a significant improvement in how you feel about your life. And most of all, don’t wait. Start today. You deserve a great life. Spending time on yourself is not selfish. In fact, one of the greatest gifts you can give your child is a happier and less stressed you.

Nancy J. Whiteman and Linda Roan-Yager are the founders of Shifting View, Inc. (www.shiftingview.com), an organization dedicated to assisting parents who have children with special needs. They also facilitate workshops and provide coaching for parents as well as for the professionals who work with them. Their book, Building a Joyful Life with your Child with Special Needs (Jessica Kingsley Publishers) is available in major bookstores nationwide.