Marriage and Raising a Child with Autism

 

Twenty-nine years ago, Ed and I were married and said our vows in front of God and our family and friends. At the time, we had no idea how those promises of commitment would be tested over time, especially in raising a child with autism, something we never anticipated. Nonetheless, the struggles we have faced have only served to make us stronger as people and our marriage stronger in faith and hope and love.

Although the statistic of an 80% divorce rate among parents of children with autism is often presented as truth, studies have shown this to be untrue. In fact, research done by Freedman and Kalb published in 2011 found “no evidence to suggest that children with ASD [autism spectrum disorder] are at an increased rate for living in a household not comprised of their two biological or adoptive parents compared to children without ASD in the United States.” Moreover, “results show that a child with ASD is slightly more likely than those without ASD to live in a traditional household.”

So, what keeps a marriage solid in the face of the obstacles autism presents in family life? I can only speak from our own experience, but I can clearly point to certain factors that have not only kept our marriage together but have also made it stronger.

First, one of the most important components of our marriage is our shared love and devotion for Alex that guides nearly every aspect of our lives. Trying to make his life the best it can be consumes our thoughts, time, and energy. Our shared goals encourage us to work together harmoniously to determine the best ways to help our son. As Alex makes progress, we celebrate together, knowing that our collaborative effort has helped make those milestones possible.

In addition, we know the value of tag-team parenting. Raising a child with autism is often daunting and can test patience and endurance. When one of us is flagging, the other steps in to give the other a needed break from the responsibilities of parenting. Sometimes we simply back the other one up by reminding Alex to thank the other parent or reiterating instructions we have heard the other one give him.

Also, we support each other by giving encouragement and praise often. Since these children don’t follow the typical patterns of development, we frequently find ourselves in situations not described in childcare manuals. Walking on uncharted paths can be scary, and we need reassurance that we’re doing the right thing. I seek guidance from Ed regarding decisions about Alex, trusting his judgment, and he consistently conveys that he completely trusts my judgment in all matters regarding Alex. Our mutual respect for one another has significantly strengthened our relationship, especially during uncertain times when we struggled to find what was best for Alex.

Another key to our marriage is division of labor. Since I am a morning person and Ed is a night owl, we take turns dealing with Alex when we are at our best. When we homeschooled Alex, we divided subject matter according to our strengths, which meant that I taught him German while Ed taught him math. He trusts me to make medical decisions, but he goes along to all of Alex’s doctor appointments and asks questions to show his support. His calm balances my anxiety, and his assertiveness makes me less timid. We complement each other well.

At other times, teamwork is essential, and we have learned to work together well. Our ability to fabricate creative details together to soothe Alex’s worries on the spur of the moment is sometimes nothing short of amazing. While we weave stories with more fiction than fact, we are able to convince Alex that he has nothing to fear. Our combined skills enable us quickly and quietly to remove Alex from a situation he suddenly finds overwhelming. In fact, we often joke that we could work for the Witness Protection Program because we can get Alex in and out of places without anyone ever knowing he was there. With just a look between us, we know what we need to do without saying a word, working together to get Alex to a secure and serene place.

Certainly the most essential pillar of our marriage is our faith. Despite our different upbringings as a Catholic altar boy raised in New York City and a Midwestern Protestant girl, we have found common ground in our Christian faith. As our faith has been tested, we have prayed harder for patience, strength, and Alex’s healing. When our prayers have been answered, we have thanked God for His goodness. As parents, we have been most proud of the faith Alex has developed, knowing that God will always take care of him.

On this anniversary of our wedding, we celebrate another year together, but perhaps more than typical couples, we know how precious our marriage is because it has been tested. While dealing with the obstacles of autism could have taken its toll on our relationship, God has given us everything we needed and allowed our love to grow stronger. Moreover, through His gift of Alex, we have a daily reminder of what is most important in life, and we are able to experience true joy watching our son, who––despite autism––finds happiness in the simple things of life.

“Children are a blessing and a gift from the Lord.” Psalm 127:3

Complements

Tomorrow Ed and I will celebrate our 22nd wedding anniversary. Along with our unconditional love for each other and Alex as well as our mutual respect, a key to the success of our marriage has been how well we balance and complement each other. While Ed is calm and take-charge, I am energetic and organized; these traits serve us well. For instance, we have an understanding about the division of tasks. If I call the plumber, Ed will explain the problem to him once he arrives. If I make the doctor’s appointment, Ed will go. In raising Alex, we have needed to pull together—sometimes as a couple and other times taking turns as individuals—to make the best life for our family.

Over the years, we have learned how to work cooperatively to help Alex. While I suspect that Ed sometimes wishes that there were a mute button for me, he patiently listens and offers his opinions when I share with him the autism research I have found. He has always trusted my judgment on medical options and various therapies, and he has consistently supported which paths I wanted to take to help Alex, even those that were somewhat unconventional. That faith in me has given me confidence to pursue a variety of interventions that have made Alex better. In addition, we have learned to work together with Alex to accommodate his needs, including sharing home schooling responsibilities. Sometimes we have had to make up stories to relieve Alex’s fears, each one contributing part of the fabrication, supporting the other, to convince Alex there was no reason to worry. Other times, we had to maneuver Alex physically to prevent his having a meltdown in public, a strange dance where we both knew the rhythms to move him deftly. Ed has jokingly said that the two of us could work for the Witness Protection Program because we could get Alex in and out of places without anyone noticing he was there—sometimes we were on either side of him and holding his hands, and other times one walked in front of Alex while the other walked behind him. By collaborating, we have kept Alex safe and content.

Fortunately, because of our job schedules, one or both of us have always been home with Alex. In fact, we were both home with him for the first eight months of his life because I was on maternity leave, and Ed was on sabbatical from teaching his college classes. Early on, we shared responsibility for Alex’s care, including feedings and diaper changes, adopting a schedule that worked well for us. Since Ed is a night owl, he would stay up late and give Alex his 2 A.M. bottle, and because I’m a morning person, I would get up to feed him at 5 A.M. Several years later, when we had to do round-the-clock chelation to eliminate the toxic metals in Alex’s system, we adopted a similar schedule. Ed gave Alex the midnight pill, we both got up to do the 3 A.M. dose, and I gave him his chelation medication at 6 A.M. I sometimes refer to our schedules during the school year as tag-team parenting because Ed is home with Alex in the mornings while I’m teaching, and then I’m home with Alex in the afternoons while Ed is teaching. On the evenings that Ed isn’t teaching classes, we’re both home, and we’re fortunate to have weekends and summers to spend together as a family. Sometimes tag-team parenting has taken on new meaning when Alex was going through challenging phases. When one of us needed a break from Alex’s demands, the other stepped up and took care of him. I am baffled how single parents—and there are many of them—raise children with autism alone. Whether providing support, allowing one parent to have free time, or working together to help the child, a strong marriage is a blessing for the parents as well as the child with autism. When the passage from I Corinthians was read at our wedding, I had no idea how prophetic those words truly are; now I am grateful for the steadfastness, faith, hope, and endurance love has given us, strengthening our marriage as we raise the precious son God has given to us.

“Love never gives up, never loses faith, is always hopeful, and endures every circumstance.”
I Corinthians 13:7