I have been away for a week providing training and technical assistance to a school district in Hawaii. Sounds like a plumb job and, yes, the weather was beautiful, the sea is always inspiring and the flora and fauna are breath-taking. The special educators have the same challenges and more that we have on the mainland. But on my flight I was thinking about the parents who are not able to take a six hour flight to paradise or take even an hour to relax and do something just for them. I wrote the following somewhere over the Pacific Ocean. The picture above is taken out the window. See the reflection of the plane in the water?
I have been thinking a lot about parents, particularly parents of children with significant disabilities. As a professor in special education I define significant disabilities as serious or severe health conditions, difficulty or inability to speak, difficulty communicating basic needs, inability or difficulty with everyday life skills such as feeding, toileting, and participation in leisure time activities, and limited fine and gross motor skills. I also include children and adolescents with severe mental health conditions that make a normal life impossible. This definition is not inclusive but I think you get the idea. An expecting mom and/or dad are expecting in many ways. They are expecting a baby who is healthy and they are expecting a wee small one who will meet milestones comparable to their peer baby friends. They are expecting some little person who will learn to say, “I love you”, and will eventually grow into adulthood with a life of their own while still keeping a loving relationship with their parents. There is endless grief when things go awry. Initial and ongoing grief is part and parcel for parents who have a child with a “significant” disability. Eventually there are ebbs and flows of this grief. Life is readjusted and some expectations fade and many more change. Some degree of acceptance comes (and goes and comes and goes). Over-riding all of the emotional and psychological aspects of parenting a child with significant disabilities is the non-stop, on-going care of this child. Remember the early days of a newborn? This little package of heart and lungs and skin and soul is yours and completely relies upon you for life. It is exhausting and exhilarating…..and although it seems endless, it is not. Soon the baby sleeps through the night, learns to walk, communicate, use the potty, socialize with other little persons and adults and moves up and away from mommies and daddies.
This is not the case for a child with significant disabilities. The care is never-ending. Parents of these tiny babies have signed on for the long stretch. I listen to and read the thoughts and worries of these parents and of the endless care they provide as they share their day to day concerns, joys and lives. Remember, “Walk in my footprints for a day. You will understand.” I haven’t and I cannot. I have been the teacher of these children and currently I spend hours and hours assuring that the future special education teachers, school psychologists, school counselors and the occasional general education teacher know how to assess, teach and support these children and adolescents and that they are prepared as best as possible to be the person in their school setting who might make a difference in these children’s’ lives. But I have not spent 24 hours with a child who needs 24 hours of my care and skills to even survive. The parents of these children and adolescents and young adults and often old adults are the experts. You struggle daily and hourly with the weary work of physical care, the night-time worries of “what if?”, “what then?” and the day to day struggle to find and keep services and support for your children. You live with secret guilt. You live with secret anger. Sometimes you are brave enough to share both. You live constantly with fear. You are the heroes. You are the wisest of men and women. Parenting a child with significant disabilities is love on overload. I listen to you and I learn. Let us all support you in every way that we can.