eSpecially Ben

This is a re-post from 2010. The night after St. Patrick’s Day long-time, dear friends of ours invited us to their ten-year old daughter’s exhibition of Irish Dance at a local college. Logan and Ben were my companions on this adventure – an adventure because the event was a good 25 minutes away and did not begin until after 7pm. And did I mention it was a school night? Ben sensed we were going somewhere different. Before we got out of the car, Ben’s arms and legs were moving a million miles an hour. This was a sure sign he was excited and happy to be out and about. Taking Ben somewhere new comes along with a lot of worry – Will I be able to get Ben easily to the location? Will Ben behave? Will he make his noises? Will we have to leave early because he’s not enjoying it? How will others react to him? I usually push past the worry, hope for the best and fly by the seat of my pants if needed. When things go well, an emotion I have not been able to label, takes hold of me. ...

When Ben was little we were never sure what his needs would be as he got older. We hoped that he would begin to talk and walk. With such a vague diagnosis, we never knew how Ben's development would progress. The idea of needing to change our home to meet Ben's needs was a fleeting thought. If Ben does not walk , was not something we spent a lot of time contemplating. Avoiding this thought was easier. Even if Ben did not walk, the future seemed a long way off. Ben is seven now and the unknown future is here and more apparent. The physical and financial problems will be major issues for us. When will we make these changes? How will we cope with these changes? Where do we add a ramp? How do we enlarge the bathroom to fit an adaptive toilet? Will our car need to be retrofitted for a wheelchair? How do we pay for it? As difficult as these decisions and financial problems will be, dealing with the emotional issues associated with these changes will be most challenging. It mea...

I recently read the above title on another blog and thought, finally, someone is going to talk about the negative thoughts, the difficult feelings and the harsh realities that accompany the world of special needs. It turned out to be about someone ranting about their guilty pleasures. So here is my attempt to tackle the topic. Ben’s behavior therapist is researching the process in which parents go through after learning they have a child with special needs for her doctoral dissertation. This may be ground breaking territory. I am unaware of a model that discusses how parents and families move through the emotions of this experience. If you think of the grief process with individuals moving through denial, anger and acceptance, this would be a similar model. What would be the steps for parents of a child with special needs? Denial, anger, withdrawal, acceptance and action/advocacy may be a part of it. Like many models, people could cycle through these levels more than once depending ...