What a mixed bag of emotions and experiences is life with our Ben. Anticipating the birth of our first child 32 years ago, I was striving for perfection – the most healthy diet, the most nurturing and natural childbirth and child-raising methods. How unexpected was the arrival of Ben, one month early and with the indicators of Down Syndrome written all over his tiny body. The first lesson we received from Ben: We are not in control.
Growing up, Ben was always a handful. Down Syndrome Plus, we called it, as we tried to deal with his impulsiveness, loud volume, energy level and short attention span. He now carries the additional diagnostic labels of autism, OCD and anxiety disorder.
Who knows, really, what is going on inside Ben’s brain? He tells us, as best as he is able, what he wants, doesn’t want, and what he is interested in. But sometimes he devolves into inarticulate noises and self-stimulating behaviors which can drive us crazy. Mostly, though, when he is calmer, he is quite delightful to be with and amazingly capable.
- Interdependence: After Ben’s birth, visits from La Leche League and an early intervention program gave me my first taste of one of the greatest blessings Ben has brought us: the community of compassionate support that has surrounded us over the years. We have walked through his life with help from family, friends, professionals and fellow parents. And our obvious need was the key that opened the door to these nourishing connections.
- What is important in life: Before Ben’s birth I was locked into the common mindset that so-called intelligence and what our society calls achievement determined a person’s worth. Knowing Ben and loving him has transformed my consciousness to see not just the intrinsic worth of each individual, but also the many varieties of intelligence and achievement. This fits neatly with my growing awareness of the presence of the holy in each living being.
- The value of structure and limitation: Routines and structure are so important for Ben. They form a safe container within which the variables are somewhat reduced so that he can cope better. Turns out, that is true for me too, although I am still figuring out this tension between freedom and limitation. Healthy habits, limitations placed on my freedom by both the realities of life and by moral choices – within this somewhat reduced menu of choices, there is still more freedom and more choice than I can take advantage of.
- Appreciation for the little things in life: How about a cozy cuddle on the couch with your 32-year-old son while watching a soothing TV favorite like “All Creatures Great and Small” (which Ben calls “vet show”?) How about riding the swings at a local school playground while the sun sets? How about cooking and eating together? How about the pride Ben feels when he independently completes the assembly of his 24-piece jigsaw puzzle and exclaims, “I did it!” How about Ben’s enjoyment of photos of himself or other familiar people?
So why write about Ben on our Adventures in the Good Life blog? I think Ben has been a great teacher for us in what a good life is, and in the complicated nature of simple living. And being his parents has certainly been a major (if unsought) adventure!