Ten Strategies for Living Cheek by Jowl with Disability

These days, we're living cheek by jowl at our house.

Four adults.
One very, very active toddler.
One dog.
In the dead of winter.
For six weeks.

We're all crammed together in the first floor of a ranch house with less than half the square footage of our previous home. At this point, all four adults are counting the days (and sometimes the hours) until the basement apartment remodel is completed, so one very active toddler and his two parents, and one dog can occupy their new digs and enjoy the great outdoors come spring.

God's granted me some "aha" moments during our cheek by jowl winter. The most surprising has been how similar this experience is to parenting a child with special needs. In both circumstances, relationships with the people you love most can begin to feel too close.

Too intense.
Too fraught with emotion.
Too fragile.
Too hard to maintain.

But without those relationships, life becomes empty.

Purposeless.
Disconnected.
Hopeless.
Isolated.

That's a dangerous state for anyone, but especially for parents of kids with disabilities special needs. Relationships are what sustain and encourage us, after all. Maintaining relationships is crucial, and in this cheek-by-jowl winter I've resurrected and implemented ten strategies I first learned when our son's special needs felt too close and intense.

1. Double check communications. Ask for and give clarification frequently rather than assuming you understood what someone said or that they understood what you said. Provide gentle reminders and ask others to remind you so things don't fall through the cracks. My husband appreciates sticky note reminders placed where he can see and take them with him to work in the morning. I appreciate email reminders from family and friends about appointments or promises made to them.

2. Pay attention to what's not said. This includes observing body language and facial expression. It also includes considering what topics are avoided and responses when certain subjects are introduced. When my adult daughter answers a question with a certain tone of voice, I know I've entered overbearing mom territory and need to back off.

3. Pray about everything. Ask God for patience, for a right attitude, for whatever you need no matter how small. Ask other people to pray specifically, too. I'd been praying for days about where the key to a lock box had been packed. This morning, I asked several friends to pray about it, too. Just a few hours later, the key was found.

4. Create healthy boundaries. This can be a tough to do in cramped spaces and in situations where decisions have life and death consequences. But when you can clearly delineate what is and isn't your responsibility, some of the weight of the world lifts from your shoulders. My husband and I watch our grandson for 30 minutes to an hour each day. Other than that, his parents are in charge.

5. Lower your expectations. I function best in a neat home. But little children need to create and learn, and that's a messy business. So until our grandson no longer needs our living room for a play area, I have made peace by lowering my expectations in favor of his healthy development. You may need to make the same decision in light of your child's special needs.

6. Create some distance. Somehow you need to carve out some space where or time when your child's special needs are not your concern. You may need to tag team with your spouse or swap child care with a friend so you can have time off. Lately, I've created distance by going to my bedroom and shutting the door to watch Netfix. After a half hour with Dick Van Dyke and Mary Tyler Moore, I'm ready to be with the fam again.

7. Celebrate progress. Take a few minutes to celebrate milestones your child achieves or progress made in your advocacy efforts. Each time the remodeling crew informs us of progress (wiring completed, studs up, a problem solved), we have a mini-celebration during supper. Celebrating together multiplies the fun.

8. Look for blessings. Instead of focusing exclusively on what's not going as planned, look for the unexpected blessings around you. The daylight hours growing longer as winter stretches on. The warmth of the sun on your back. A kind word from a stranger. Your child's smile. A passage of Scripture that speaks directly to your struggles. Every time my grandson comes up behind me and hugs my legs, I thank God for this sweet blessing made possible because of our crowded situation.

9. Get some exercise. Moving your body makes you feel better and sets a good example for your kids. With some creativity, you can make exercise part of your day. Go for a walk, with the kids if need be. Work out to an exercise video, with the kids if need be. You get the drift. My personal favorite was putting on music and dancing with my kids when they were little. These days, I'm passing the tradition on to my grandson.

10. Take extra Vitamin D. My daughter suggested extra Vitamin D during the dark days of winter, and listening to her was a wise choice. My energy level has been much easier to maintain for the past few months. A little extra Vitamin D might help you, too.

I never dreamed that God would use what I learned decades ago while parenting a child with special needs to prepare me to live cheek by jowl with several adults, a toddler, and one dog in our house. I hope those lessons make your today a little easier as you live cheek by jowl with disabilities and special needs at your house, too.

-- Jolene Philo

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