The stack of building blocks at the front of the room looms high in Renee Thomas’ workshop for mothers of children who have arthritis. Each block represents a daily responsibility for the mothers – take the kids to school, pay bills, make lunches. As duties are called out by audience members and blocks stacked on top of one another, the tower grows wobbly.
The stack is a large burden for any parent to carry on any day, says Thomas, a support and educational rights volunteer facilitator for the Arthritis Foundation’s Northeastern Ohio office. Then, on top of the stack, place the extra responsibility and pressure added to life by having to deal with arthritis.
“When we have arthritis hit our lives we cannot manage all this,” she says as she puts the last block labeled “arthritis” on the very top.
The extra weight of the block proves too much and tilts the balance of the tower. Gravity wins out and the building blocks clatter and crash to the floor.
Personal Time Matters
Finding the right balance can be tricky, but Thomas says there is a way. Oddly enough, it's making room for one more priority – personal time – that can help maintain the right balance. It’s the one thing that many parents fail to list when detailing their priorities for a day or week. Without personal time, it’s easy to wear yourself too thin when you have a child with a chronic disease, explains Thomas.
“I think it is a natural instinct,” she says. “Most parents sacrifice for their child and try and do without to make their child’s life better. Certainly with a child with a disability you work harder to try and make everything better for them.”
Thomas knows. Her daughter Brooke, 23, was diagnosed with polyarticular juvenile idiopathic arthritis at age 7. She says sacrificing important time for yourself can be detrimental to both you and your child. It can overwhelm you, stress you out and take a toll on your ability to care for your child as you would like.
But there is hope. You can find the right balance and make some time for yourself with out the guilt. Thomas offers these tips:
Give yourself permission. It's a natural inclination to put your child's needs above your own. But give yourself permission to put yourself first occasionally. “It’s OK to be flexible,” she says. “Sometimes [your child] might not be happy to go and sit with a different person for the day. Our job isn’t always to make our child happy. Your child doesn’t have to be happy all the time. That’s OK.”
Create structure. Make a plan for “self-time” and slot it into your regular schedule. If not, the details of day-to-day activities or matters that seem urgent can take over. “I think you really have to structure things,” Thomas says. “This is me time, this is mom and dad time … let your kids see that these times are important.”
Form friendships, trade favors. Consider leaving your kids for a few hours or for a sleepover with trusted friends with their own kids. Next time, offer to return the favor for them. Thomas says this is a great way to get quality self-time for more than just a few moments.
Parents can initiate these types of friendships with people from church, school or in their neighborhood. “Parents have to pursue it,” she says. “They have to be brave and initiate these to develop these relationships. Many people are willing to help, but you have to ask.”
Go clubbing. Check out babysitting clubs; there may be some in your area that you can foster relationships with and learn to trust to care for your child. Also, babysitting costs can add up. Don’t neglect giving yourself time because there's no money. Budget money ahead of time and make a habit of it.
Getting your kids involved in developing their own activities outside of school is also a great idea. Not only is this good for them socially, it can afford you an hour or two of time to yourself to take care of your needs. You may be surprised at a new passion or talent that your child develops.
Send them packing. “Send your kids with arthritis to camp and your other child to a different camp. That way everyone gets a break. Siblings get a break and your child with arthritis gets a break from having someone worry about them,” says Thomas.
These planned special activities can be something everyone looks forward to each year and can serve as “mini vacations” for parents. Parents sometimes don’t think of allowing their kids to go to non-arthritis camps. Most camps are required to make accommodations for children’s disabilities, so these are an option as well.
New Found Time
What's a parent to do with newly-found “me” time? Thomas suggests finding something that makes you feel fulfilled, other than parenting.
“You need to have something that you feel good about doing,” she says. “You want to have something that fulfills your personal and emotional needs.”
That can be anything from taking regular walks with a neighbor to signing up for painting classes at the local arts center to practicing mediation. You decide.
Also, if you're in a relationship, spend some time with your partner. Devoting time to fostering your relationship can provide you with a much needed shoulder to lean on when things get stressful.
While it may take hard work to give yourself permission to take personal time and persistence to get it, it's important for parents’ personal health. Being a happy, healthy individual can make you a better parent.