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 on the challenges they face and the support they receive. A model like this may help "normalize" the feelings and emotions that parents experience.
When we ask someone, “How are you doing?” we usually do not want to hear anything more than, “Fine.” We are in a culture where it is not usual to talk about problems that are personal, or if we do, it is at $125 an hour. And when it comes to talking about your negative emotions about having a child with special needs, it almost seems taboo.
I have had negative thoughts about having a special needs child – the usual, Why us? Am I being punished? The first summer after we found out that Ben was not “typical” I spent three days in bed. By day three, I did the old, ‘pick myself up by my bootstraps’ talk and decided to go on. I often move to the action phase to get myself going.
There have been more recent times where I cannot take the tantrums, noise, yelling, biting, hair-pulling, not-sleeping that comes with Ben. I would joke with my mom that I was sending Ben to a public residential facility if he didn’t shape up. This was my way of sharing that I was having a hard time.
I’ve had very sad thoughts about Ben being elderly. Who would care for him? Will these people know that he was loved by his parents and family? Will they know that he is a truly special person?
I know that I block out a lot of thoughts about the future. I do not allow myself to imagine too far ahead because I do not think I could handle that flood of emotion. It would be too much for me to take at one time.
My thoughts run the gamut – from frustration to sadness to pride to hopelessness – and sometimes they cycle in a very short period of time.
I carry these feelings around with me for lengths of time and then I finally share them with my husband, and then I am freed of them. When the emotions are trapped in my heart and brain, they swirl around becoming bigger, almost consuming me. When I speak the words out loud, they all become okay. And they even become manageable. Partly because when I share them with my husband, he can help me make sense of them. We always end with a prayer because that heals too.