When Sundays aren't restful: A special-needs parent's tale

By Megan Goates

For the Deseret News

Published: Thursday, Jan. 23 2014 9:00 a.m. MST

Sundays are generally considered a day of rest. For parents of special-needs kids, it can be just the opposite. But, it can also be a day of love.

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Sundays have historically been known as a day of rest, particularly in the culture of The Church of Jesus Christ of Latter-day Saints. But there is among us a lesser-known yet vibrant population of special-needs families who currently find Sundays to be, hands down, one of the most difficult days of the week.

This is absolutely true for my boisterous church-going family, which includes two boys in the autism spectrum who have other diagnoses as well. For us, Sundays are about as restful as a triathalon — a triathalon in Sunday-best clothes with two boys with special needs tethered to us, and a 2-year-old strapped to our backs.

I used to think we were a bunch of losers because we seemed to be the only family that couldn't handle being at church for the duration of the meetings. An ongoing slew of behavior problems made staying and serving in a church calling tricky, what with taking shifts and trading off.

For years we have followed a Sunday pattern where one of us wrestles a wailing, flailing 9-year-old out of the chapel and into the car to decompress at home while the other replaces a mounting physiological sense of frustration with a presentable face and heads off to teach the gospel doctrine class, young women or nursery.

Rare days when the entire crew mysteriously lasts through all three hours of LDS church meetings feel like miraculous achievements.

My friends with special children face similar challenges trying to interface their unique families with the quiet, reverent, crowded and germ-filled situation that is church.

Some can't take their medically fragile kids to church for six months of the year because of the risk of illnesses. A few hours amid the coughing and the dripping noses, and their child can end up hospitalized.

Some perpetually struggle to cope with a child whose deficits prevent him from sitting and listening for long periods of time. While they may look no different from their neuro-typical peers in Primary, kids like mine are vastly different in their ability to be quiet and still.

Thus, Sundays are deeply strenuous and often emotional. It's the day of the week for me when all my frustrations and inadequacies crash tsunami-like over me and things feel awfully real and very hard.

Counterintuitively, Sundays are also usually the day that I feel spiritually quenched. There are elements of those frenetic days at church (or at home with my noisy child) that satisfy me.

Sundays highlight the crucible that is life with disabled family members as they also provide an opportunity to feel loved — by neighbors and friends and by God.

In my experience, parents of special-needs kids need a spiritual boost as much as the next person. Sometimes, they may need it more.

Attending church meetings is hard. But it's also worthwhile, which is why we keep struggling and trying to attend.

We are pretty jazzed about a new development that has the potential to change our Sundays for the better: Our 9-year-old has two new helpers at church, recently commissioned to help him navigate the two long hours of classes following sacrament meeting.

Two of my neighbors are offering the purest kind of loving service — helping my son who, in terms of his abilities, could be called the "least among" us (see Luke 9:48).

This is why for me Sundays aren't a day of rest. They are a day of love.

Megan Goates is a Westminster College and Utah State University alumna, a mother and a blogger at herestooursurvival.blogspot.com.

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