Two followers of our blog, Rebecca and Jamie Adam have graciously volunteered to share from their experiences today. To learn more of why I invited Rebecca and Jamie to share their story, check out yesterday’s post. Here’s their story:
Jamie Adam grew up outside of Reading, PA and attended Ursinus College where he received a B.S. in Biology in 1992. He and Becky were married that same year. Jamie received his Ph.D in Microbiology and M.D. from the University of Rochester in 2001. He received his medical residency training in pathology at the University of Virginia from 2001-2005. Jamie is currently the Clinical Laboratory Director at Sharon Regional Health System in Sharon, PA.
Rebecca graduated with a B.S. in Biology also in 1992 from Ursinus College. She received her B.S. in nursing from the University of Rochester in 1996. She currently is a full-time mom who cyberschools their four sons.
Rebecca: My husband and I are blessed with four sons ages 14, 11, 8, and 6. Our oldest son has been diagnosed with Asperger’s syndrome, our third son with mild autism, and our youngest son with ADHD. They are all wonderful boys and I hesitate to emphasize these labels rather than who they truly are as the young men God created them to be.
My husband and I have served in different children’s ministries in various churches (we moved often due to his medical school and residency). Even before we knew that our children had special needs – our oldest son was not diagnosed until age 9 and our third was diagnosed at 4 – we taught a special needs Sunday School class at a church in Virginia. We always had a heart towards children, but this was our first experience working with children with special needs and we loved it.
Our class had a teenage boy with Down’s Syndrome who could recite many Bible verses and two sweet teenage girls with moderate mental retardation. There also was a boy with Asperger’s (curiously enough my husband used to compliment me on how well I bonded and worked with this boy) – God has a way of preparing us for the challenges we meet in our lives!
Jamie: Becky and I had discussed whether we might be willing to adopt a special needs child after we had our own children, obviously not knowing what paths our future would follow.
Rebecca: I wish I could say that I liked the way our church in Virginia integrated the children with special needs, but we found they were isolated from the rest of their peers. Their Sunday school classroom was small and far removed from the rest of the teenagers. I used to feel sorry for the parents of our kids because they had to walk all the way around the church sanctuary to pick up their children, making it difficult for them to mingle with other families. Our kids, for some good reasons (noise sensitivity being one), did not go to the teenage praise worship sessions but had to sit in on the elementary song time where they were conspicuous. I remember the first order of business of our Sunday School class was to ask for prayer requests. Our boy with Down’s syndrome would shoot up his hand right away and every week his prayer would be the same – he would ask God to give him a friend. I wondered why his need for friendship wasn’t being met in the church. Just across the sanctuary there were about fifty “normal” teenagers in their weekly praise session, but our designated room was far away not only physically, but emotionally. This was my first real taste of some of the struggles churches face in integrating children with special needs into practices of worship. I truly had no idea back then that eight years later these struggles would become our own.
The diagnosis of our first and third sons came after our relocation to Pennsylvania. Our oldest son’s Asperger’s diagnosis followed years of seeing various pediatricians and child psychologists and knowing that his development was not typical. It was almost a relief to have a name for what he was struggling with, but the diagnosis of our third came as a major shock in our lives.
Jamie: Even though I’m a physician, I hadn’t realized that our boys’ struggles were anything well out of the ordinary. I felt remorse for not recognizing their needs so that appropriate interventions could have been initiated earlier. Once I started to learn about autism spectrum disorders and more effective ways to help my boys, the future appeared promising again. For instance, I’ve always wanted to remain emotionally close with my boys and was disappointed that these relationships did not seem to be developing as I had expected. Simply finding out that I needed to initiate physical and emotional closeness felt like a spiritual victory.
Rebecca: The guilt I bore, as a mom, was almost unbearable. In the church nursery, one of my sons would often go into a near catatonic state and not move or make any contact with his environment. I remember the nursery worker would say to me after the service, “Whatever you gave him for breakfast this morning, don’t ever give him that again!” I already felt like everything was all my fault. I needed so desperately to hear from the church that these children were a gift, wonderfully designed by God and that it wasn’t my fault. I understand this reassurance was a lot to expect knowing that the teacher got stuck scrubbing out the bathroom in the wake of my son’s panic in the anticipation of the toilet flushing. Thankfully, there were some Christians in my life who did remind me of their value in God’s eyes.
With our third son we struggled with physical therapy, occupational therapy, and speech therapy to get him ready for kindergarten. I remember fighting to keep him enrolled in a small Christian preschool near our home. Some of my son’s behaviors were difficult to deal with and I sympathized with his teachers. At one point, his preschool teacher and the school director pulled me aside and stated, essentially, that if I wanted to keep him enrolled that would be fine, but they did not have the time to deal with him. We agonized for months and interviewed our public school system, concluding he needed a smaller school environment. I had always dreamed of having my children go to a Christian school. I quickly learned, however, that having a child with a developmental disability makes it nearly impossible to enroll in many private schools. While my son was capable of doing the academic work with the help of an aide, our preferred Christian school rejected him, because they did not feel they could deal with a child with autism. I was livid. For decades my husband and I have worked actively in the pro-life movement. I do not understand how we as Christians can feel such righteous indignation at the thought of a mother aborting her developing baby because of a disability and yet find no regret about telling that same mother five years later that they simply do not have the resources nor the staff to deal with her child. I do feel that by rejecting children with special needs we create an elitism instead of a true world-changing Christianity.
Jamie: As a man, my main reaction to these roadblocks was to want to fight harder for my children. Although there are certainly occasions when we need to “storm the beaches” for our kids, I came to understand that putting our children in a situation where they would be unwelcome was not necessarily a battle worth winning. In our circumstances, there were no great educational alternatives and, therefore, we had to pursue the best choice available (for us, cyberschooling) and regularly evaluate whether it’s still superior to other options.
Rebecca: There have been many bright moments when our Christian brothers and sisters have borne our burdens. Once, some local church members built a swing from a tree trunk and placed it in our basement. It remains my son’s primary method to calm himself during the day. I think the greatest gift a church can offer parents of special needs children is simply to ask them about their youngsters. Many times I think people are afraid to ask about our sons. Perhaps the greatest gift to me was learning to give and receive grace and forgiveness from other believers.
It came as a great surprise recently when my son’s former pre-school teacher caught my arm as I walked through a local craft store. As I struggled to remember who she was, she began crying as she told me she no longer was teaching. She had received an advanced degree, became a Christian counselor, and worked a lot with families struggling with autism. She never had forgotten or had been able to forgive herself for how she had received our son that year. In the middle of the store aisle she asked for my forgiveness. Truthfully, the mother bear inside me was still angry as I carried around so many hurts from that first year. However, I realized our sons will constantly be in the same position of needing Christian people in their lives who can grant them grace and mercy. They may always be socially awkward and say or do things that others don’t expect from them. They need Christ’s unconditional love and acceptance to be evident in the people around them.
Jamie: For me, these struggles have served to some extent as a voyage of self-discovery. Although I don’t have Asperger’s, it has become clear that I share some of my sons’ traits. I’m not the only one who’s noticed. While discussing our boys’ challenges with my parents a few years ago, my mom interjected that she was sorry for not recognizing that I too had difficulties interacting with other kids when I was a child. It’s never too late to start the healing process.