Living in the mystery
Events of the past 6-8 weeks stack to the point my reflections seem insufficient. The weight of uncertainty concerning the future of kks reached oppressive levels in early August. I like to think I live a life of flexibility, but i believe everyone needs to live with some level of certainty. With kks we held many questions. Autism? Aspberger's? Would she be involved in Special Education the rest of her life? Would her health and development regress? What will be the portrait of her childhood? We knew that kks was more than her diagnosis could ever be, but how shall we order our lives? Our struggles with kks relate as much to her inability to deal with uncertainty as much as ours. With great anticipation, we traveled to the Twin Cities, not only to learn more about our daughter; we could also gain respite in a place that feels like a home to us. We know something of the rhythm of life in the Twin Cities, we went to a place of comfort.
Our family was more than pleased about the level of care at the University of Minnesota. Over two days we were not able to move out of mystery. We have only learned a way to live in the mystery of kks' development. Living in the Protestant Midwest, I have learned that congregational life has little time for the mystery of God. The hidden and mysterious God is often lost in the utilitarian understanding of "God's plan" for my/your life. Our life with God overflows with the mysterious. The mystery of God will not be obstructed, but the Protestant/Utilitarian church obsesses about what it "gets done." I am amazed how much I have swirled in that vortex believing that furious activity is the outstretched arm of God. God has created something in our daughter whom we know well, but the gift of her life is also a mystery.
The basics of what we have learned:
1. Kks has several autistic behaviors.
2. Kks also has several behaviors contrary to any pattern of Autism or Aspberger's
3. Kks' condition lies in the nebulous nether regions of the Autism Spectrum known as Pervasive Development Disorder: Not Otherwise Specified (aka PDD-NOS).
4. Speech therapy, behavior therapy and social structure are critical to her development in the next few years.
5. The University of Minnesota will continue to monitor her progress. She needs multiple points of observation before a solid cognitive evaluation can be formulated. The love and structure she receives at home and the Church/community, and therapies she receives from various health care professionals and educators offer kks the best opportunity for healthy development. The doctors intuit that kks will not live with Autism the rest of her life, but she is at significant risk for learning disorders that cannot be identified without further observation.
Kks is now settling into a routine that seems good for all of us. Kks knows more of what is coming on a daily basis in her world. We know that we have a long road ahead of us, but we can more gracefully live in the mystery of God. Some days are harder than others. I like living in a place of hope.
I will do my best to keep you posted on what it's like to live in our section of the mystery.