How Lack of Support Leads to Struggles in Marriage When You Parent Kids With Disabilities


Let’s talk real: marriage is hard.

A few years ago my husband and I were under a lot of stress unable to access help for one of our daughters. It left us in a constant crisis-mode where rather than fighting the system, we seemed to be fighting each other. I yelled and slammed doors. It wasn’t pretty. Once we found the help necessary, our stress decreased, we were able to sleep and we had time and energy to invest in our marriage again.

You might have heard parents of kids with disabilities are at a higher risk of divorce. While there isn’t enough information or studies to give a definite statistic, Steve Grcevich, a child psychologist, has gathered information from different studies and presented them to show where this ideology comes from. I strongly suspect this increased chance of divorce is a direct result of lack of support. We have more responsibilities, yet we are often on our own as not everyone understand disability. Not to mention the difficulty in accessing services and support for our children.

We reached out to the parents in our community and asked, “What is one thing you feel is the biggest challenge in marriage?”

These are the most common challenges shared by our community:

Different parenting styles

No two people parent the same way. Most of the time, it is OK to have different parenting styles as long as the core beliefs are the same and both parents agree on discipline.

Tips:

  • Talk ahead of time. Make plans on how to handle certain ongoing situations.
  • Don’t disagree in front of the kids.
  • Agree on discipline and consequences.

Resources:

Lack of privacy

When you parent kids with disabilities, often there are people coming in and out of your home: case workers, therapists, nurses or respite providers. Sometimes your home might feel like it is not your home.

Tips:

  • Plan specific family times, and protect those times.
  • If you find yourself extremely overwhelmed, it is OK to cancel therapy for the day (or a week if necessary).
  • Set clear boundaries and expectations ahead of time.
  • Designate a place in your home to be a “sanctuary” for rest and destress.

Resources:

No time alone or date night

Several parents said, “date night, what’s that?” For all parents, it is hard to find time to go out or have alone time. We all want to, but for many, this is not an option due to child-care, finances or energy.

Tips:

  • Once the kids go to bed, be intentional about connecting with each other.
  • Rethink of date night as any time throughout the day you can have alone time with your spouse. If you are too tired at night, maybe try it during the morning. If kids are in school, maybe plan to meet somewhere for lunch.
  • Find ways to communicate necessary information regarding the kids so that time alone can be spent connecting and not rehashing details.

Resources

Lack of intimacy

Intimacy is not just about sex, although sex is important. Intimacy is about quality time together. When you become a parent, the attention shifts from the couple to the children. When children have a disability, the extra challenges and lack of supports may make this focus on the children become even greater.

Tips:

  • Schedule sex if necessary.
  • Make sure you are spending some alone time.
  • Once kids go to bed, find something fun you can do together, even if it is Netflix.
  • Get a set of “conversation cards,” and ask each other questions.
  • Text throughout the day.
  • Make sure you spend at least 10-15 minutes of uninterrupted time.
  • Schedule dates.
  • If possible, plan an overnight trip at least once a year — more if you have support and people available to watch your kids.

Resources:

Lack of energy

At the end of the day, many of us feel tired. Go out for a date? I’d rather stay home and check Facebook, watch a show or go to sleep.

Tips:

  • Try to make self-care a priority.
  • Eat right, exercise and get plenty of rest to have more energy.
  • Take a hard look at your schedule. If you say “yes” to too many things, you won’t have energy to do things that matter to you, such as connecting with your spouse.

Resources:

Balancing life

Life is busy, and life is messy. As parents of kids with disabilities we are parents, teachers, therapists, chauffeurs, counselors, nurses and advocates.

Tips:

  • Do one thing at a time, and look at what is most important.
  • If possible, reduce stress by having other people do tasks you would usually do. For example, hire someone to clean your house or subscribe to a meal delivery services.
  • While getting organized takes work and discipline, getting organized in the every day little things can make a big difference.

Resources:

Communication

Most marriage experts will say communication is important and one of the biggest challenges for couples. Parenting kids with disabilities is no exception to that.

Tips:

  • Counseling. Counseling is not only for when a marriage is in trouble and needs work. Counseling is great for “maintenance” of a healthy marriage, too.
  • Use an online calendar that is connected to your partner’s.
  • Exercise “couch time” where you set aside 10 minutes a day just to talk to your spouse — no TV and no phones. Teach your children those 10 minutes are only for you and your spouse and not to interrupt.

Resources:

Not having people to provide respite

Parents of children with disabilities tend to be “on” 24/7. The need for respite is crucial, yet few parents are able to access the rest they need for a lack of respite providers or options. Sometimes it could be due to a medically fragile child and the expertise needed from the respite provider.

Tips:

  • Call your local human services office in your area and ask about possible respite choices. Most counties and social workers have information on respite solutions.
  • Check out local churches offering respite nights. They do not require you to be a member or a person of faith.
  • Ask other parents who they use for respite and see if it is a possibility for you, too.

Resources:

Lack of sleep

Sleep is important for our overall health, and when we don’t get enough sleep it affects all areas of our life, including our marriage. Without sleep, we are not rested, we might snap easier, we might be more irritable, we might not feel “romantic” or lack energy for life.

Tips:

  • Be consistent with your bedtime, and try to make it a priority.
  • If your child is up at night, chances are you are not getting enough sleep either, so try to find time to take a nap.
  • Tag team with your spouse: one night one parent is up, the next night you switch.
  • If you have trouble sleeping, talk to your doctor about options.

Resources:

Lack of family support

They say it takes a village to raise a child, and that feels more true when you have a child with extra needs. Often times the “village” comes from within the family system. After all, families tend to gather for celebrations, holidays and special occasions. Yet sometimes our biggest critics come from within our family, and we lack their support. While ideally a grandparent or aunt or uncle could help with the kids for a date night, if those relationships are strained it is not an option anymore.

Tips:

  • Share your story with people you trust and invite them to help you and be a part of your life.
  • Join a support group.

Resources:

Finances

You can do a google search and quickly find out one of the biggest issues facing most couples is finances. You might not even have to do a google search to know this is true. When we get married, we have to find a way to reconcile two different ways to manage money; this can be a challenge even before kids enter in the picture.

Having a family is expensive, and adding the extra needs of children with disabilities can be hard on the bank account. Some children require multiple hospitalizations, some need medications, some attend therapy several times a week, some need adaptive equipment, some have special diets. The list of needs can go on and on. Many families who have kids with disabilities struggle financially, and this can become a significant stressor in a marriage. Many parents feel overworked and are barely making ends meet.

Tips:

  • Look into state and federal funded waiver programs, medicaid and SSI. Some of these programs are not based on income (such as waivers) and often times include medical coverage, services, respite funding, medical supplies and other important services. Many of these services have a waiting list, but there are programs and grants that can sometimes help with some of the costs. Call you local human services office and ask about waivers and other programs available for children with disabilities.
  • Look into SSI to determine if your family qualifies (SSI is based on income).
  • Learn how to budget. Create a realistic budget and stick with it; ask for help from a financial planner and identify nonessential expenses (most of us have them).

Resources:

I believe many of the challenges in marriages could be helped if we had access to adequate and reliable supports. It makes a difference to know we are not alone and that we have people or interventions set in place to help us when we need it.

Marriage is an investment and requires work, just like anything of value in our lives.

What about you — what has helped your marriage? Let us know in the comments.

Thinkstock image by Grandfailure

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