As parents of exceptional children, our lives are filled with many challenges and stresses. Despite these challenges, many of us are managing to live full, rich, joyful lives. Yet the journey from stress and distress to living a joyful life is not always easy.
I know this is true because I have traveled this road myself. When my daughter Miah was born 101/2 years ago with cleft lip and, at that time, undetected submucousal cleft palate and Down syndrome, the first words I said to her as we lay skin to skin were "you will have a great life!" And she does. She dances in a troupe, sings in a choir, is a Brownie, has sleepovers and playdates, and loves life. It wasn't until several years after her birth that I took the time to make that same promise to myself. You see I had gotten caught up in what happens to many people dealing with hardships they didn't anticipate. I was so busy helping her that I forgot how great my own life could be.
My business partner Nancy Whiteman and I are writing a book about how parents manage this difficult balancing act-living their own lives to the fullest while parenting their children with love and compassion. Nancy and I have spent the past several months interviewing parents of children with many types of needs from physical and cognitive disabilities to mental illness. I would like to share three of the many qualities that characterize resilient parents.
The first of these three qualities is the ability to be able to see their child as a whole, vital person - much more than the diagnosis sometimes suggests. Parents who focused on their child as a child first were clearly more joyful and positive.
As one mom said, "I think for the whole first year, every time I thought of Cammie, I thought of Down syndrome. I just couldn't separate the two. I'd think of all the what-ifs. Now when I think of Cammie, it's not really about the Down syndrome, it's all the other things she does. I think also of this little girl who needs help in this area or that area, like any of my kids."
Another mom talked of feeling the weight of sadness lifting from her heart as she began envisioning more successes for her daughter. She was beginning to see all her daughter could do instead of seeing what she couldn't.
For some moms, the ability to see their child as a child first opened doors to a fuller relationship. One woman we interviewed noted that she had never done anything alone with her four-year-old son with hearing loss that didn't involve helping therapeutic experience!"
In our workshops, we help parents cultivate this feeling of appreciation for their child through a variety of exercises. One of the activities is to have parents write a letter about their child with a difference, focusing on what is wonderful about them and what they most admire.
One mom wrote of her child with bipolar disorder, "When she is feeling well, Cara is one of the most loving, big-hearted people I have ever met. If another child is upset or crying, she is the first one there to put her arm around her and ask her what's wrong. She has an incredible imagination and her ability to lose herself in fantasy and to become wholly engaged in a story or a game is incredible to watch. She is funny and charming and attracts other people to her through her openness and her essentially joyful spirit."
The second quality we've noticed is the ability to put life experience into perspective and to create personal meaning around it. Here are some comments from mothers we have interviewed. Notice how they are utilizing different strategies to create this personal meaning and optimism.
When asked if her religious beliefs helped, one mom stated, "We go to church but I wouldn't say that we're religious in that sense. So I don't think in terms of "oh God gave us this little gift" but I do think that nothing is coincidental. I think Sierra came to us for a reason, not necessarily a religious reason but I think of all the people we've met because of Sierra that we'd never met before. Some incredible, incredible people have come into our lives. Everyone has to come to a way to make it seem like it's OK, this is what it is. It's just so different for everybody. Will I ever know why Sierra has what she has? Probably not, but there are so many things that have happened because of Sierra, it's been pretty neat."
When asked what helped one mom make meaning of her situation, she replied, "I get out in nature. It's hard not to see the big picture when you're looking at a horizon filled with magnificent mountains. I come away with a lot of peace after reflecting on a scene that is so much bigger than my problems."
One mom with a child with Down syndrome said, "I try to look at the things I say to myself when I'm suffering. Sometimes my thought goes, 'No one could ever feel this pain that I'm feeling' And sometimes I'm thinking, 'I shouldn't complain. Others have it worse than I do.' Each of these viewpoints lacks compassion. I try to find the middle way. Be soft with myself. I remind myself that my suffering does matter and can lead to great lessons if I face it with an open spirit."
The third quality that is essential to building a joyful life is the ability to continue paying attention to your own needs despite all the stresses, strains and demands of parenting their special needs children.
One of the things we've seen time and again is that truly resilient parents 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 a separate person, no matter how much their child needs 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 towards life and provides a sense of perspective about your situation.
We frequently talk with parents who tell us that they don't have time to focus on themselves-that it's simply impossible and would take away from the care that their child needs. In response we often talk about the body of research that shows that children do better when their parents are happy.
Take to heart the fact that parents who don't take care of themselves cannot be at their best for their children. It's like the instructions that flight attendants always tell us before take-off-in the event of an emergency, put on your own oxygen mask before helping your child.
But how do you actually do it? One mom we interviewed commented, "I had to make a conscious decision that I'm going to transcend this; I'm going to get past this. This is not going to ruin my life. In fact, I'm going to have an enviable life."
So, the first step is a very conscious one. Resilient parents have a positive intention about their lives and they articulate those intentions to themselves and those around them. It's also helpful to be in touch with what you want from your life and what gives you joy. Many parents told us this could be as simple as resuming activities that give them pleasure. One father commented that this seemed overwhelming at first, but was crucial to his well-being.
Parents find that they need to make conscious choices-and usually some changes- to regain a sense of balance in their lives. In our workshop, we do an exercise called "the Energy Pie" to help parents focus on where their energy is going today and where they would like to see it going in the future. Then, we work with them to put together a specific plan of how they will get there. Do you know what you want your life to look like? Do you have a plan for how to get there?
I have mentioned only three of the many special qualities we have found to characterize resilient parents. There are many more ways for all of us to cultivate these qualities in ourselves. I hope some of the ideas mentioned will help you in your journey to build a joyful, fulfilling life for yourself and your child.
This article was reprinted with permission from Exceptional Families of Boulder, CO
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