Special Needs and Marriage
God gives us a biblical perspective for building oneness in marriage: “For this reason a man will leave his father and mother and be united to his wife, and they will become one flesh” (Genesis 2:24, NIV). God’s original design was for oneness – leaving parents, uniting with our spouse and becoming one.
Achieving that oneness takes place when we are in agreement with God’s design for marriage. It’s the leaving of our childhood families to start our own and to be “one” in doing so – one in our thinking, one in communicating, one in our dreaming and one in sexual intimacy.
But while God’s blueprint, His plan, is contained in that verse, the realities of life often cause us to lose sight of that plan. Most couples start off marriage thinking that their time is their own, that there will be time to think and dream together, and that they’ll enjoy the “better, richer and in health” parts of the vows they took. The “worse, poorer and sickness” parts don’t enter most pre-marriage thoughts, or, if they do, they’re dismissed as something that will happen to someone else.
But somewhere along the way, expectations collide with real life and our hopes and dreams give way to hindrances and obstacles that begin to make marriage hard.
Hindrances can be anything from the differences in our individual personalities to our particular needs and wants to general differences that simply get in the way of things running smoothly. Hindrances are things we figured we’d deal with, but weren’t sure to what degree. Obstacles, meanwhile, are those things we weren’t prepared for. For Joe and me, our obstacle was the drastic change to our lives when we started trying to build oneness in marriage while dealing with the stress of caring for someone with special needs. Needless to say, it’s a major obstacle facing many marriages.
Perhaps we never thought it could happen to us. But it did, and we are now among those who deal with the daily stress of caring for those with special needs, finding ourselves disappointed and discouraged, and experiencing the death of a vision we once had.
We have learned that a strong marriage is essential. Without it, caring for someone with special needs is that much more difficult and challenging. Combine high frustration levels with tumultuous emotions, medical concerns, behavior problems, housing considerations and family and other relationship issues, it appears to be a job with no end.
In the articles that follow, we will address building oneness in marriage while caring for someone with special needs. We’ll discuss about managing the daily stress that comes with providing 24/7 care. And we will present ideas for building oneness, including how to deal with communication, conflict, creative dating, romance, intimacy and the importance of leaving a godly legacy like any other marriage. There is nothing like a crisis in marriage to help us determine our true priorities.
Stress and Conflict
In managing and resolving conflict, we provide our child(ren) and spouse the stability we all desire.
Death and taxes are inescapable. No one will leave this planet without eventually facing these two issues. That’s just a fact.
Like death and taxes, conflict in marriage is virtually inescapable. All married couples will deal with conflict. The key word here is all. Because conflict occurs in all marriages, the goal of marriage is not to be conflict-free, but to handle conflict correctly when it occurs. If you don’t have conflict in your marriage, just be patient: It’s only a matter of time.
When a couple adds the responsibility of caring for a special-needs individual to an already busy schedule, the potential for conflict radically increases – due to the increased number of decisions needing to be made, and responsibilities to be carried out and agreed upon by both spouses. The long-term success of any relationship depends on how well a couple is able to handle routine stress and the conflict that can result.
In marriage, one of our goals should be to learn to handle and resolve conflict in a healthy way. At one end of the spectrum are simpler issues like how to best squeeze the toothpaste tube or how to put the toilet paper on the roll. At the other end of the spectrum – and particularly when there are special needs concerns – couples are confronted with issues that are more critical and immediate, such as who will stay at the hospital overnight with the child, administer medicines when home, take “night duty” when needed, call the doctors, maintain the medical records, keep track of the paperwork, provide transportation – not to mention the responsibility of other children who also need to be fed, bathed, put to bed and taken care of in a variety of ways! Every one of these issues (and it’s not an exhaustive list) presents the potential for conflict!
When we married we had expectations about how we wanted our life to be; our own concept of what “normal” would look like. When taking care of an individual with special needs became part of our marriage and family dynamics, what we thought of as “normal” immediately, dramatically and drastically changed. Neither of us signed up for taking care of a child or parents with special needs when we got married.
When we don’t get what we want or expect, when our desires are not fulfilled, when we don’t deal with the hurt and conflict properly, that’s when our unrealistic expectations often lead to a lack of fulfillment in our relationships. The result is conflict and anger, possibly even divorce. We have seen marriages of those caring for children with special needs tragically end in divorce because the couple could not agree on how to handle the many necessary decisions. They were unable to find their “new normal” as a couple.
Coming to grips with this “new normal” requires helping one another with the additional care-giving responsibilities. Good communication is also vital when it comes to making wise decisions for the marriage, the person with special needs and the rest of the family. As a couple, we resolved to not to move forward with any critical decisions until we came to a point where we could both agree. (The only exceptions are emergency situations, in which case the one in the midst of the situation can make that immediate decision.) This agreement has kept us from many conflicts. It may require a lot of time and sometimes lively discussion to reach an agreement, but once we get to that point, both of us are satisfied.
For a marriage to be well connected and moving forward, the couple must recognize that they are a TEAM: Together Each Accomplishes More. It’s what a good sports teams is all about, as well as a good marriage – especially as it relates to raising and taking care of individuals with special needs.
We find our new normal through positive communication, working together to provide care, planning for the future, taking time to cultivate our marriage – both in our daily routines as well as in the area of romance and intimacy. In short, we work as a team to accomplish all that God desires of us. In managing and resolving conflict, we provide our child(ren) and spouse the stability we all desire.
In our lack of preparedness, communication can be frustrating and often leads to a lack of unity in the marriage.
One of the greatest frustrations in caring for a special needs child or adult is the difficulty of trying to understand what they are trying to communicate, and then, as a married couple, trying not to get frustrated when we can’t understand each other! Few of us are prepared for all the challenges associated with providing this level of care. In our lack of preparedness, communication can be frustrating and often leads to a lack of unity in the marriage.
Communication is an essential skill in every marriage. Effective communication requires that a couple to seek to understand (by listening) and then to be understood (by expressing). It sounds simple, but it’s hard enough to achieve under “normal” circumstances. Add in the variable of children – with one or more of those children having special needs – along with the care of an elderly parent with dementia or Alzheimer’s disease, and your communication skills are sure to be stretched and challenged.
We have had the responsibility and privilege of caring for two daughters, a son with multiple disabilities and Joe’s aging mother. Her vascular dementia and our son Joey’s mental retardation created challenging, frustrating and always interesting conversation around our dinner table. Many of those conversations were often a struggle to figure out and follow. Sometimes the hectic pace, stress and pressures of the day had us whirling in words with nothing meaningful being said.
Family relationships were becoming strained due to the amount of effort it took to make our own communication work! We quickly learned that we needed to create a climate of caring, listening and understanding in our home for everyone – most importantly for ourselves. Without the right climate at home, a couple begins to drift apart. Without a solid commitment to one another, that drifting can ultimately lead to divorce if the necessary corrective steps are not taken. We made it our purpose to become better listeners – giving our focused attention to what was being said by everyone as well as what we said to each other. We took the time to listen and respond lovingly, creating the best possible atmosphere.
It takes energy to really listen to what someone is saying. At the heart of understanding is the amount of effort one puts forth in understanding what others think and how they feel. This is difficult enough when communicating with healthy people; trying to understand a special needs individual can be that much harder.
Improving one’s listening skills requires a commitment of both time and attention. Learn to focus on what is being said – not just the way it is said. Take the time to ask clarifying questions. Put yourself into the other person’s situation. These are steps to better understanding.
Just as good listening skills are essential to a healthy relationship, so too are good speaking skills. Ecclesiastes 3:1, 7b says, “There is an appointed time for everything. And there is a time for every event under heaven… a time to be silent and a time to speak.” Sometimes we need to be quiet, sometimes we need to speak up, and all the time we need to discern the better option of the two. As we improve our communication with the special needs person in our life, the communication with our spouse should also improve.
A few habits we have found helpful in our journey to improved communication:
- Writing out care issues, daily routines, etc.
- Talking through all major decisions (medical decisions, schooling issues, family challenges, etc.), until a mutual agreement is reached.
- Working to resolve the smaller pieces of each problem rather than tackling the whole thing at once.
- Giving each other our full attention, taking the time to acknowledge feelings, fears, pain, etc.
- Offering solutions without jumping to conclusions, being demanding or judging.
- Discussing thoughts and feelings rather than arguing (or worse – yelling).
- Not shutting down (remember, you need each other).
- Showing respect for each other’s ideas.
- Giving everyone in the home the opportunity to communicate their thoughts and concerns.
- Understanding personal family dynamics – how each family member is affected.
- Scheduling one-on-one time – times of uninterrupted, meaningful conversation – with each family member (especially with children who would otherwise miss out due to the attention required by the person with special needs).
Improving our ability to listen and express ourselves takes time and patience, and – most importantly – love and commitment. It’s an investment, sure, but it’s also one that will pay big dividends with our loved ones and our spouse.
Romance and Intimacy
A couple’s level of oneness is usually evident in their level of companionship, commitment and passion for each other.
A couple’s level of oneness is usually evident in their level of companionship, commitment and passion for each other – as well as their spiritual intimacy with God. With that in mind, the time and effort required in caring for someone with special needs means that those couples often have to work that much harder to make romance and intimacy a priority in their marriage.
When couples first start out, there seems to be plenty of time to enjoy being together, time for adventure and spontaneity, time to sit quietly or communicate without interruption, distractions or pressures. Yet as the responsibilities of marriage and home start to accumulate, the potential for negative changes in the romance department also accumulate. Add children to the equation (particularly one or more with special needs), and there’s a recipe for disaster in terms of marital intimacy.
Getting enough rest when caring for someone else’s needs 24/7 remains one of the most difficult issues we’ve had to address, but it’s also one of the most important. Rest restores, heals and refreshes. If we don’t make the effort to get proper rest, we’ll have limited energy for marital romance and intimacy. We might need to nap when our children nap, or simply asking others for help with our child so we can get away or sleep. If that thought makes you feel guilty, then remember that the more rested and healthy we are, the better we are at caregiving. Putting aside pride, humbly asking for help and showing appreciation and thankfulness is necessary for our mental and physical health.
Rest can be spiritual, as spiritual rest comes through spiritual intimacy with God. Developing a consistent and quality time of prayer and Bible reading helps prepare us for the frustrations and challenges we inevitably experience. Quieting ourselves before Him allows us to pursue closeness with Him. Pursuing oneness with Him helps us ultimately achieve oneness with each other.
Rest is also physical. Caring for another person can be exhausting. When our children were little, Joe would often come home exhausted after a long day at the office. I was often tired, too, having cared for the home and children all day. It became a pattern for us to offer each other a few minutes of time to relax at different points during the evening. Joe might take a 15-minute power nap, check his e-mail or go through the mail while I watched the children. After dinner, Joe might watch the children and fold laundry while I enjoyed a bubble bath and a good book. Time for refreshment, relaxation and rest leads to a better mental and emotional attitude and something to offer to each other at the end of the day. Taking advantage of these opportunities often led to more positive communication, whether verbal or sexual.
Keeping romance alive requires good communication. Not just organizing the family calendar and schedule of events; not just discussing the “business” of the family; but the kind of communication that brings a married couple closer together as companions and lovers. Sharing our innermost thoughts, frustrations, hopes and desires with each other keeps communication open, honest and vibrant. This kind of transparency reinforces a committed relationship – one that fosters safety and security. Transparent conversation translates into companionship, which translates into passion! But it takes time and effort. It must be a priority.
The pressures and challenges of caring for someone with special needs leads to the dilemma of how to keep passion alive and sexual intimacy vibrant. Maintaining passion and intimacy can be in any marriage, but without effort and planning, it likely won’t happen. Adding the variable of constant care for a special needs individual requires even more planning. A weeklong vacation on another continent might sound great, but a couple hours sipping coffee at a local shop might have to suffice. A fancy dinner out and an uninterrupted movie might give way to takeout and a rented movie.
Check these ideas off your list as you have opportunity, then try adding some of your own:
- Sit on the porch or couch and talk about the future.
- Plan a make-believe trip you’d like to take together someday.
- Laugh together over lighthearted events.
- When you have a private moment or the chance to get away, make an effort to be intimate. Do whatever it takes to make it happen – regularly.
- Have a favorite meal (or one delivered) over candlelight after your children are asleep.
- Watch a favorite show in bed. When it’s over, spend 10 minutes cuddling and see what happens.
- Kiss for 30 seconds after you pray together. Every night. We dare you.
- Learn to play golf, even if poorly. Enjoy the quiet and beauty of the outdoors … and each others company!
- Play a card or board game. The winner makes plans for the two of you for the rest of the evening – and the loser still wins!
- Go to the park. Take a walk, jog or simply sit by the water.
- Go shopping together for ingredients for a new recipe you’ll prepare together. Feed each other a few bites as you talk about favorite dating memories.
- Arrange for someone you trust to care for your children while you plan a weekend retreat or a week away. Just don’t forget to come home!
Sometimes the simpler activities are the most fun. Enjoy planning these special times together to keep the passion in your relationship. Nurturing the marital relationship is an essential element in helping couples “go the distance” in marriage.
A Wife and Mother’s Role
It often falls on the wife and mother to discern how to best support and nurture relationships within the family.
It wasn’t until our second child was born that we realized how different raising her was compared with our firstborn – our son with special needs. Yet no matter the different roles and responsibilities each person has or takes on, it often falls on the wife and mother to discern how to best support and nurture each relationship within the family.
Wife and mother. In both of these roles, I (Cindi) have been stretched through daily challenges and frustrations as well as through life’s victories and joys. I have learned in both roles to perfect the dance that best fits each relationship within my own family – to master the movements that make each relationship work together. Our goal as a couple and as individuals is to first develop our relationship with God, to second keep our marriage relationship strong, so that, third, we have what it takes to raise our children and care for them the way God would want.
Work, ministry and friends – while important – should not take precedence over our relationship as a couple, or over our relationship with our children. It’s tough enough balancing the demands of normal, everyday life, but when one child requires hours of therapies, hospital stays and seemingly constant attention, that’s a whole new ball game.
As a wife, I want to be a supportive helper to my husband. Each morning, Joe and I have our individual routines involved in getting our son ready for his supervised place of employment. As Joe walks out the door to take Joey to work, we briefly share one or two things we can pray for one another throughout the day. We connect again later over coffee or a snack and share the ups and downs of our day. We might have to wait until everyone is in bed and the needs of our son are met for the day, but this habit has kept us on the same page these 30 years when we could have easily been going in two different directions. It’s allowed us the freedom to air frustrations from the day and to really listen to the other talk about work and home and the never-ending responsibilities of caring for our son.
In a culture that continues to try to redefine “submission”, I’ve found it imperative to submit – to yield and follow my husband’s lead. He often sees things very differently than I. We submit to one another on many issues and typically reach compromises that work for both of us, but in the midst of little rest, too many decisions to be made in caring for our son, and too much to do, I have followed his lead because he often sees what I’m missing.
I recall a time when I was putting myself in a “helping” situation with someone who would have drained me. That’s when Joe reminded me of a previous similar time that took its toll on me. His loving, protective reminder was just the right guidance I needed. As a result, I did not add that situation to my already full schedule. Sometimes we can spin so many plates at one time – caring for our children, making meals for someone in need, participating in ministry or serving on several school committees – that we fail to notice how life at home is falling apart. (Or we are!)
A solid marriage is one that’s better able to support and nurture all the members of the family. The pressures of caring for our son caused me to ask myself and God each day if I was modeling to our daughters (and others who might be observing) an attitude of service and a heart of compassion, willingness and sacrifice. It takes effort to reflect those traits. As I learned, I began to practice the following behaviors:
- Protecting the girls rather than overprotecting them (they had to be treated differently than our son with special needs).
- Giving attention to each child before they needed it. Sharing special times doing things they individually enjoyed – both quality time and quantity time.
- Providing spiritual training, cultural opportunities and creative outlets appropriate to their ages, abilities and interests.
- Valuing each child as individuals because God made them so wonderfully different! Recognizing that they all had special needs.
- Being proud of each one whenever they put forth effort – whether they excelled or not.
- Not comparing!
- Helping our children understand that the different seasons of life have different needs, along with the importance of adjusting to them. Joey didn’t understand this, but what a valuable lesson for the rest of us! (For example: Bike riding as a family lasted only until Joey was too big for an adaptive bike trailer.)
- Teaching them that while life isn’t always fair, God gives us what we really need and the ability to handle it. (Psalm 138:8: “God will accomplish what concerns me.”)
Respecting our typically developing daughters’ individual social lives – training them to know how to care for our son, but never expecting it to be “their job.” (Arranging for a caretaker or paying them gave them freedom and responsibility without feeling taken advantage of. As we respected their young lives, they became helpful and compassionate woman who love Joey, and ones who have offered to care for him someday.)
The Husband and Father’s Role
When a man enters into a covenant relationship with his bride, he commits to the responsibilities of loving, honoring and cherishing her.
When a man enters into a covenant relationship with his bride, he commits to the responsibilities of loving, honoring and cherishing her. As a Christian husband, the strength I (Joe) need in order to carry out these responsibilities ultimately flows out of my relationship with God. It requires a moment-by-moment dependence on God’s Spirit. It takes time and discipline to maintain, especially with the many obstacles that cross our path – in my case, raising a child with special needs.
The vows we shared included “for better or worse, in sickness and in health.” There was never a thought about the possibility of having a special needs child, nor any discussion of how much stress and strain such a situation would put on our marriage. And in the midst of life’s challenges is another: being the husband and father God calls us to be.
We can’t let the obstacles of life get in the way of building a strong marriage. When we fail to sacrificially love our wife as Christ loved the Church (Ephesians 5:25), we begin to compromise this most cherished relationship. As a husband, and as the father of a special needs adult child, it’s a daily challenge to stay focused when the challenges of caregiving collide with the needs of my wife and other children.
Raising a child with special needs, while at the same time nurturing my relationship with my wife, requires that I make time to communicate with my wife every day. What I need to communicate most is my love. In our situation, I went off to work while my wife stayed home and cared for our children. When one or more of children have special needs, you can be certain that a wife’s daily responsibilities have been full and challenging. Recognizing that fact was the first step toward realizing that no matter what kind of day I had, my wife “had a day,” too!
When our children were small, it was great when she gave me a bit of time to regroup from my day. We had dinner together as a family, and then I would give her a break from the children. I’d take the kids for walks in nice weather or play in the backyard. As the kids grew, my time with them might include helping with homework, playing video games or just talking. Cindi appreciated this time alone without worrying about the needs of the children; time alone to think without the noise and commotion that she’d endured all day long; time for an evening out with friends to simply “get away.” Taking care of the kids was a way for me to serve my wife, letting her know that I was committed to her and cherished her. As a result, we were able to demonstrate God’s unconditional love and grace to each other and to the children, and become an example to those around us.
In addition to my role as a husband, one of my greatest titles is “Dad.” Christian fathers are to sacrificially love our children. We demonstrate to our children that we care for them by making them a priority. Cultivating relationships with each child requires time, discipline and intentionality. When so much time is spent caring for the child(ren) with special needs, it’s easy to lose track of our other children’s needs. It is a challenge to spend both quality and quantity time with the other children. Each one needs to know with absolute certainty that we love them. Spending time with them goes a long way toward making them feel protected and loved.
I was intentional about “dating” my two girls. Our regular dates included restaurants, local events and festivals, the zoo, walks, jogs, movies, ice cream and other fun things. Our dates were also opportunities to talk, ask questions, and sometimes just to listen to them. These are some of my fondest memories of their childhoods, and we continue to enjoy our special times together (even with one daughter married and the other in college).
We invested time in teaching all of our children God’s Word. We’d discuss current topics of interest to each and used these opportunities to guide them. These teaching moments may not have connected with Joey in the same way they did for the girls, but we included him as much as we could. Without question, Joey required a different kind of time and attention.
As a dad, I once dreamed of playing sports with a son – maybe even coaching – but because that wasn’t to be, I found other ways to “connect” with Joey. He spent a lot of time doing repetitive therapies in his early years, but as he grew older, he and I began to connect playing video games. We have learned to play sports together … through video! He excels at baseball and my forte’ is football, but we still connect and have fun together!
Yes, it takes time. But if we want to pass on our faith and impact future generations for Christ, we must spend quality and quantity time with each of our children. When we leave a godly legacy, we can look back with great satisfaction.
It’s been my observation that many men are overwhelmed by the responsibility of being the husbands and fathers God has called them to be. Yet we have this assurance: that “nothing is impossible with God” (Luke 1:37). As we ask God to empower us as men, we can give our children not just an inheritance, but a heritage. And we can give our wife what she needs most – to be loved, honored and cherished.
Following the Lord’s Plan
The long haul is a day-to-day, moment-by-moment journey with each other and God.
Life isn’t fair. If we live long enough, we’ll experience joy and laughter, sorrow and pain. There is nothing like a crisis to awaken compassion for others and to mold a heart that lovingly surrenders to our Maker. Many people say they have learned the most through trials, but few of us want to sign up for that particular classroom. In order to weather the storms of disappointment in our lives, we need to face whatever comes our way. And how we handle life’s challenges will help shape the legacy we leave our children and others in our life.
The proper attitude is vital in serving one with special needs. Frustrations are inevitable – late nights when the child is sick, hospital visits, appointments with therapists, case workers and teachers. Every trial builds character. God doesn’t ask us to understand it, but He does ask us to accept it and make the necessary adjustments. He wants us to go with His plan instead of our own. When we “embrace the place” the Lord has for us, making this particular challenge our ministry, then others will take notice. As others take notice, we begin to leave a legacy.
We all make choices. Some choices involve good planning. Some involve wise decision making. We can choose to serve as husband and wife together and model to our children that those “for better or worse” vows really work, or we can go our separate ways and hope everything works out. Sure, we all have human failings, but we can develop and make better choices each day. Making wise choices won’t keep us from failing, getting frustrated or wishing for a different life. Our choices will often require us to work through failures and frustrations. But if we do so in a healthy way, our lives will eventually be a blessing to us and others.
When our son was young, Cindi’s father told us: “Someday, Joey will be such a blessing to you.” In the midst of much illness, seizures and therapies, it was hard to grasp that thought in a positive way. Observing other families whose children seemed “perfect” left us feeling empty and alone. Almost 30 years later, we now see more clearly the truth of what Dad said. As our girls leave home for lives of their own, our son is a companion whose simple mind and ways keeps us young at heart.
We’ve learned to intentionally look for the blessings and benefits of caring for a child with special needs. (The Bible tells us: “It is good for me that I was afflicted, that I may learn Thy statutes” Psalms 199:71.) We’ve learned to love unconditionally, serve endlessly and pray without ceasing. We’ve been able to work with incredible professionals and meet friends along the way who’ve shared in our journey, either in their own life circumstance or because they embraced us in ours. We’ve enjoyed the blessings of fellow believers who’ve prayed us through life.
As we’ve embraced our son (and our daughters) and His plan for us, we’ve also embraced a “don’t quit” mentality for the long haul. The long haul is a day-to-day, moment-by-moment journey with each other and God. We haven’t reached the end of the road yet, but when we peer into the rearview mirror, it’s good to realize that we have no regrets.
Next Steps and Related Information
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