I looked in my rear-view mirror and quickly wiped the tears from my eyes. It was too late. The telltale puffy redness behind my sunglasses could not be erased. Breathing deeply, I opened the car door and walked through the familiar Davis Elementary School entrance, a near-daily experience in response to teachers' concerns about my two autism-spectrum sons.
Today I was the problem. As I entered the principal's office, there stood my three children waiting for me, clad in their footy pajamas for Pajama Day. Only Pajama Day apparently wasn't scheduled until the following week. Their humiliation wasn't their own doing. This time, it was mine.
I wiped my daughter's tears, assured my sons that their superhero jammies would not brand them for life, and gave them a change of clothes. I headed home alone. Done. I was done with everything. Done trying to look as if we were a "normal" family. Done trying to look like a "normal" mom. And done trying to juggle the bazillion therapy sessions, doctor's appointments, IEP meetings, and clueless questions from well-meaning teachers who "didn't get it."
I cried. And I raged at God, demanding to know what I was supposed to do now. What is a mother supposed to do when she not only feels incapable of protecting her children from themselves, but obviously is incapable of protecting them from herself?
Some time later, I sat alone, tears spent, completely exhausted. In the quiet I sensed God's gentle voice, seeming to ask, "So now are you finally ready?" Would I stop hiding from the world and start communicating with others, outside of my husband? Could I admit to others our weaknesses and our needs? Was there something beyond just the usual Bible studies and Sunday school pat answers? Were we ready to stop our solo act and our prideful "No, really, we're all fine" performance?
And my answer was "yes." But we would need to do this together. We needed deeper relationships outside the two of us.
With children who have special needs, marriage has its own difficulties, beyond the normal struggles. We have extra financial strains resulting from medical costs. Often, couples bear the loss of one spouse's income as one parent must be home, available for all the meetings, appointments, and crises around the special-needs children. We face emotional strains from the continual stresses, and this can cause a breakdown in marital communication, resentment, grieving, and loss of intimacy. We tend toward isolation, pulling away from a community that doesn't seem to understand us. Isolation can occur between us, as husband and wife, as we dig deeper into our solitary roles, in order to just manage and cope.
But a meaningful, beautiful life together, and a good and growing marriage, do not have to end with a child's diagnosis of disability. Our two sons are diagnosed with Asperger Syndrome. We have had to learn to lean often and hard on God's promises, and have added some essential tools to our marriage kit. But 22 years after Adrian and I first committed to love each other for better or for worse, we have come to realize two things. Our sons' special abilities and needs have become, at times, a vehicle for great blessing. They also have become a catalyst for growth in directions we never dreamed possible. And we are not unique.
"A big misconception families have is that with disability, life is pretty much over," Jeff Davidson told me over coffee. Davidson, a father of a grown special-needs son, is the founder and president of Rising Above Ministries, a national ministry born out of his and his wife's passion to help other couples like themselves. "If I could have told my younger self something I know now about parenting a special-needs son, it's that you don't have to just survive. You can thrive. You'll see in a few years time, it's going to be the biggest blessing of your life."
For Adrian and me, realizing that blessing meant we first had to reach out to others. Most guys are reluctant to join anything with the word "support" in the title. Adrian joined a group of men from church (not specifically a special-needs support group)—just guys who have met together each Saturday morning for the last eight years to hang out, pray for each other, learn together, and just do the "guy things" that make each Saturday morning worth returning to again and again. He knows they have his back.
I asked God to provide friendships for me as well. Although it took lots of prayer and several months of waiting, he finally led me to a group of women who for the last eight years have become sisters. They faithfully pray for my children and for my marriage. I can ask for help, or they offer it, when we are too overwhelmed to think straight.
More ways to pursue community:
- Connect with a church with a special-needs support group for parents.
- Give pride the boot; allow others the joy of exercising their gifts of help and service. (Running a weekly errand for you? Providing childcare one night a month for a date night? Releasing you from carpool duty?)
- Look for an online group specializing in your child's disability, where you can post your questions, hear others' concerns, and realize you are not alone.
- Try hosting a "reverse intervention," a party with close friends and family, where you can share a video presentation and other information to give them insight into your lives and to provide an opportunity for them to see what practical ways they can help.
- Seek out other organizations in your area who sponsor support groups for specific disabilities or school district-based groups of special needs families, for a place to share stories and learn about local services and helps.
- Connect with a national group like Joni and Friends to find out where a local chapter is located in your area.
Poor communication may be where marriages of special-needs parents suffer most. It's a problem that leads to resentment, frustration over poorly delineated roles, and intimacy's collapse into the great abyss of marital stress and isolation.
For Adrian and me, maintaining good communication around our sons' special needs has meant accepting that, of necessity, one of us would need to be home. While my freelance writing dovetailed with my desire to be home anyway, we have tried to avoid the common pitfall where the stay-at-home spouse becomes the resident "expert," shouldering all the weight of disability care.
At one point, we needed more help in communication. We found a marriage counselor (experienced with special needs) who was able to help us both with a special-needs parenting issue and also to help us better understand how we could work together as a team. Because in the end, that is what we are striving for and what we want to be in this: a united team.
More ways to improve communication:
- Create daily routines of communication and connection like prayer together, time alone with God, and time to spell out your to-dos for the day or week.
- Be intentional about listening and honestly expressing thoughts, difficulties, dreams, and appreciation for your partner.
- Learn about each other's tasks so that no one person is solely responsible for all the appointments, the finances, or schoolwork. (Post lists of medications and care-giving routines so both of you can share in those tasks as needed.)
Cultivating Romance and Intimacy
Cindi and Joe Ferrini, authors of Unexpected Journey and speakers about all-things-marriage for special-needs parents, recommend doing everything possible to take regular date nights, even if it means just sitting on the back porch to enjoy the stars. For Laurie Wallin, life coach, blogger, and author of Embrace the Crazy, date nights were so important that she and her husband chose to sacrifice a year's vacation in order to afford childcare for weekly date nights.
The Ferrinis also underscore the importance of keeping intimacy alive by getting enough rest (napping when the children sleep if necessary—those dishes can wait!), and they recommend the nightly practice of the "30-second kiss."
"We talk about our day, have a short prayer, and kiss for 30 seconds every night," Cindi explained. Then she laughed, admitting, "And most of the time, Joe is hoping it will lead to something else, but the point is, what are you investing in your marriage? It's the little things. Even going shopping together. What will work for you?"
While cruising the Riviera is certainly not in the realm of possibility at this stage in our lives, Adrian and I definitely believe that a nightly cuddle is good medicine—and as for the recent addition of the 30-second kiss? We highly recommend it.
Kelli Ra Anderson is a freelance writer for several magazines, specializing in topics of encouragement and help for special-needs families. She's author of the recently published devotional Divine Duct Tape and a blogger at www.kellira.com as well as with award-winning Not-Alone.org, a blog for special-needs parents. Kelli lives in St. Charles, Illinois, with her husband and three teens.