Tips on Marriage and Parenting Kids With Disabilities

Close your eyes and go back in time. Picture your first few meetings with your spouse, the awkward eye contact, the skipping of the heart beat, the uninhibited laughter and the fluttering of imaginary butterflies all around. Love is a strong emotion and can make some of us go weak in our knees.

Most of us experience it at one point or the other. We dream about creating a small universe, inhabiting it with our partner, having kids and then living happily ever after. But if this would happen all the time, this world would be quite a monotonous place to live in. The truth is, things don’t always go as planned. Life altering events, like birth of a child with a disability — which can seem catastrophic to a new couple who is starting out on this journey of parenthood and dreamt a different version of life — can threaten the foundation of their alternate universe.

When we become parents, the partnership, companionship, compatibility and chemistry can disappear like a whiff of smoke and the only thing that remains is the intense desire to become a better parent. This is when the marriage can become a lesser priority and when “the mother” takes over “the wife” and “the woman.”

When I received SOS calls from three parents of kids with disabilities in one week sharing yet another fight or argument with their partners, I couldn’t help but wonder what was happening. I spoke to a dozen mothers and a couple of fathers and here is what I found:

1. Some mothers are invested and exhausted beyond their capabilities.

This could be largely blamed on evolution or culture, as women are often brought up to be the primary caregivers. Already fighting with the pressure of raising a child with disabilities, mothers often take their role rather seriously and get caught up in this labyrinth of familial and social pressures, intense thoughts, sea of information and internal emotional conflicts.

This can create an imbalance in the relationship, because the mothers get exhausted, not just physically or emotionally, but also psychologically and mentally. As a result, they can isolate themselves not just from the world, but often from their partners, too.  Fathers who are equally impacted by the situation don’t always know how to reach out to her, and can either get worked up or find their peace by pulling away. The “unsaid and unheard” voices inside both of them become a reason for their dwindling relationship, especially in the initial few months or years after a diagnosis.

2. Lack of empathy.

This can’t be stressed enough. Men are often brought up very differently than women and are conditioned not to display their emotions, which is seen as a sign of weakness. The result is that even in extremely daunting situations  — like dealing with the diagnosis — some men don’t show their emotional vulnerability, and hence, don’t get compassion and empathy like mothers do, assuming that as men they already know how to deal with such situations.

Later, when they want to show the concern and love to their partners, they might feel short of words or actions to make the woman feel understood. In contrast, women tend to show their pain in a variety of ways. They can cry, howl, go sleep deprived, get cranky, blame themselves or stop talking altogether. This “coming to terms” may take a while, and is the most crucial time for a couple. This is mostly the time when couples can drift apart. Knowing and understanding each other’s coping mechanism can help the marriage immensely.

3. The communication stops.

The diagnosis becomes the elephant in the room, the only difference is that it becomes the only thing talked about. Although often times unfounded, the scary thoughts of an uncertain future, the compromises both will have to make in careers, the lost dreams, the siblings’ added responsibilities, the financial responsibility accompanying the medical care and the therapies never seem to stop. But the “normal” life and communication stops, leading to consistent stress levels which again takes a toll on the health of the couple.

A good friend and a mother of a child with a disability who is separated from her husband confessed, how in hindsight, she feels her husband wasn’t really at fault:

“I was 22, newly married, doing very well in my career when I got pregnant. Before our first anniversary, I was a mother of a child with disabilities and since it was an arranged marriage, we hadn’t really spent enough time with each other or had created any memories by then. My in-laws were only trying to find ‘who to blame.’ My son’s birth shook our marriage to the core and it fell apart. I was busy blaming my parents, my destiny and everyone else and never really thought that my husband, too, was going through similar emotions. We drifted apart in the very initial months and never really got back in.

Now when I think about it, I realize I was too engrossed with my pain and thought it didn’t change his life as much because he was still going to work and getting respite, whereas I was ‘stuck.’ I started to feel resentment towards him, which was unfair, but I didn’t know any better. I was too young and an emotional wreck at that.”

What can be done to make sure that a marriage, even at its weakest point, can survive a blow? Any marriage needs to be nurtured. Many times, even during challenging circumstances, partners can grow closer than ever! After speaking to couples who have worked their differences out and have helped their marriage by believing in their relationships, these were their pointers:

1. Talk, talk and talk.

Communication happens when both partners are ready to listen to each other and talk it out. In a difficult situation, such as this when you find your partner to be withdrawn and confined to his/her own self, don’t wait, but start talking and making yourself available. Be there to make it easy for him/her to start talking when they want to. Research suggests most of the times, marital problems couples face are not as much caused by the child’s needs, but rather from the likelihood of couples retreating into themselves and stop communicating with one another.

2. You are more than the sum total of your life after motherhood.

Women, after becoming mothers, can “forget” they had a life before their child was born. They “forget” the friends, the hobbies and the things they used to enjoy before motherhood. A distraction from “all things maternal” can work wonderfully for a marriage. Have a life outside of ‘”parenting.” Make friends who have nothing to do with disability, watch movies, enjoy a girls/guys night out. Understand this is not just important, but necessary. If you feel disconnected with old friends, reach out to a mother/father figure or mentor and pour your heart out. They’ve treaded the same path before you and may have some very useful tips and strategies. Let experience help you.

3. A few ground rules can save a lot of pain.

There will be issues and concerns in every marriage. No two humans can live together in perfect harmony. It wasn’t all heavenly when you were with your parents or with your flat mates. All couples have disagreements, arguments and fights. There is nothing you are feeling, which millions have not felt before. The one good thing you can do is to establish some rules beforehand. For example, don’t bring up past mistakes to the current argument or no blaming a spouse for a child’s development. Learn to argue fair and square. Playing the blame game can surely burn a marriage to ashes. Be careful!

4. Stop being an expert at home.

In any marriage, one of the partners is usually more organized, more knowledgeable, more of a child expert, interested in researching, exploring or googling — but that doesn’t mean the other partner’s efforts are any less. Both partners contribute in their own way in child rearing. Don’t underestimate your partner’s involvement. The best way is to divide the responsibilities and be respectful of each other. If one partner is good with documents, applications, education, he/she should stick to that and the other one should take responsibility for sports, play dates, extra-curricular activities etc. Sit together, discuss, plan and play to your strengths.

5. Rediscover each other.

With a child with a disability at home, rediscovering each other can be the last thing on your mind. If it is so, be intentional about making your marriage a priority. Working on your marriage is not an option, You have to do it. You two are the most important stakeholders here and your connection is going to be instrumental for your child’s future. Rediscover each other.

Try to establish routines which can allow you to spend time together every day. Like evening tea or a stroll after dinner when you can connect like partners and not necessarily like parents. Go out without kids and indulge in some fun and romance. Finding simple ways to reach out to each other can give your relationship a much needed foundation during difficult times.

6. Acknowledge and realize it can take some time for the “storm” to pass.

The diagnosis, the denial, anger, acceptance and any other feelings can take a toll in the relationship of parents of kids with disabilities. However, knowing those feelings will pass as we learn about disability can hopefully be a motivation to wait it out. The strong emotional reactions are a result of this new situation and not necessarily a personality trait. Knowing this can help parents see things in the right perspective and wait till the storm is over.

7. Take time for yourself.

Last, but not the least: spend time alone. It is one of the most important things and it could save your marriage. Spending time alone is like recharging your batteries; it needs to be done every now and then. If you see that your partner needs it, take charge and take the kids out for an hour or so. They would probably appreciate it. Working parents go to work and spend physical time away from everything, which helps, but they may not be away mentally. For stay at home parents, some may feel they spend every waking minute with the child having no physical or emotional time away; this can become disastrous for their own emotional health. When you see your other half struggle, lend a helping hand! That’s what a relationship is all about.

You can only give what you have. In order to give love, confidence and happiness to the child, you both need to have them first. Give your marriage a fighting chance before deciding on other alternatives.

This quote from Dave Willis sums up Marriage beautifully: “A strong marriage requires loving your spouse even in those moments when they aren’t being lovable; it means believing in them even when they struggle to believe in themselves.”

Follow this journey at Two Minute Parenting. 

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Getty image by Sam Edwards