I cried for a year after we learned of Sam’s diagnosis. It wasn’t fatal or debilitating, yet his having Asperger’s syndrome sent me into mourning for my vision of motherhood and for what I thought a typical Adventist family would be. I mourned for whom I thought my son would be. He was just in first grade.
Our large church was full of active children and youth performing on stage, going camping, playing basketball, participating in talent shows, even preaching sermons. I cried at almost every church service and program, heartbroken for my boy, who was overwhelmed and unhappy. I felt overwhelmed and unhappy myself. I was embarrassed by his differences, and feeling guilty for the embarrassment. I felt angry at the church members who looked at us with pity or told us he’d grow out of it.
My own childhood spent in summer camps, Vacation Bible School, camp meeting, Pathfinders, and Adventist schools from kindergarten to graduate school charted out my motherhood road map. Now, I was in completely new territory, with no emotional GPS to guide me and very little help.
Sam went to school at a local large Adventist elementary school. Though he didn’t misbehave in school, he struggled to stay on task and was often observed daydreaming, for which the teacher publicly scolded him. He held in the pain of embarrassment and feeling overwhelmed until the end of the school day, when he came home bursting with anger and frustration. He hated everyone and everything about school, and we didn’t know why.
When we shared the diagnosis of Asperger’s syndrome with school staff, the principal told us that the school could not meet his needs, and recommended that we send him to public school. Even after we offered to pay for an aide to work in the classroom with him, the principal refused. This local expression of Adventist education, one of my core values, failed us. I cried.
Though I’m an active church member with a great support system, my faith has been tested and tattered many times.
Sam entered public school in second grade. Their services helped for a while, but by the middle of fourth grade Sam was struggling again. His anger and frustration had returned. We could have legally fought for the school system to pay for private special education, but the legal fees were prohibitive, and would be reimbursed by the school district only if we won the court battle.
We chose to self-pay for private special education, which Sam attended from mid-fourth through seventh grade. The skills learned in these schools prepared him for reentering mainstream school in eighth grade, and he did very well through his senior year of high school. He had a good group of friends, made good grades, and garnered the respect of his teachers. He’s now attending his first year at a public university, majoring in nuclear engineering. Whew! He made it!
My celebration of his success is dampened by the residual effects of raising a son with Asperger’s syndrome. Though I’m an active church member with a great support system of friends and family, my faith has been tested and tattered many times. I’m in an ongoing struggle with depression fed by the aforementioned feelings of embarrassment and guilt, as well as loneliness, guilt, money stress, work stress, guilt, and low self-esteem.
Though shy, Sam was well-behaved in public. Church members and friends didn’t see his behavior at home. It was very difficult for me to ask for help or respite when his negative behavior wasn’t obvious to them. I didn’t want to be perceived as complaining or acting too much like a victim, so I didn’t ask for help. That led us to travel a lonely road.
Only my mother, who often helped us with child care and transportation, understood the challenges I faced. While Sam did well learning and applying his new skills at school, it took a lot out of him. When he returned home, he let it all go. He was oppositional, bullied his little brother, had tremendous meltdowns, and said whatever came into his head. He had no qualms pointing out my failure. My mother was in her 70s, and I continually fought my guilt in taking advantage of her in her retirement years. At 85, she is still my solace.
Money was another stressor. Sam’s tuition ranged from $18,000 to $29,000 a year. Special-needs day camps averaged $600 per week, and we had day care and summer day camp expenses for our second son. In addition, medical insurance didn’t cover a lot of our mental health expenses. Providers often didn’t participate in insurance plans, and we had to self-pay.
I went back to work, returning to a high-level communications position, reporting directly to the president. Stress at work compounded the stress at home, and I burned out and resigned after 18 months. I then took a job as an administrative assistant. It wasn’t in my professional track, but it paid the bills and lightened my stress load. Though my work stress was lessened, I’m still struggling with my professional identity.
When you come across flustered moms with badly behaving children, remember that you don’t know their story. So offer help, not judgment. When children in your church don’t participate, don’t be too hard on them. Get to know the parents. Invite them to help in Sabbath School class. Or let Sabbath School be a respite. Please, give them all the love and grace you can possibly muster.
If you are one of those moms or a mom like me, please try to open up and share your story with at least one other person. Don’t be ashamed or guilty for what you’re going through. You are a child of God: you are loved. And there’s always someone out there who will help.
Angie Holdsworth Abraham is a freelance writer living on Bainbridge Island in the Pacific Northwest. For virtual support for families with autism, Angie recommends the Facebook group AdventistsWithAutism at https://www.facebook.com/groups/AdventistsWithAutism.