by Beth Ayers, Family Support Lead
June 11, 2024
I did not expect to be raising a child with a disability. In fact, I’m pretty sure no parent does. When I dreamed of having children, I imagined them healthy and living life like their peers. Sure, there was bound to be misbehavior and bumps along the way, but not a disability. Certainly not one that would shatter my hopes and dreams and force me to change my expectations. Adapting to being a parent or caregiver of a child with a disability can be hard.
Dr. Nancy Miller, a psychotherapist and social worker, developed the Stages of Adaption from her work with parents of children with disabilities. Understanding the stages and where we are in them can help us navigate our new world and not feel quite so alone in it. The 4 Stages of Adaptation are: Survival, Searching, Settled In, and Separating.
Stage 1: Survival
Common emotions parents and caregivers experience in this stage are denial, anxiety, and fear. We are learning the rules of the game and finding out who’s on our team. Our social groups often change, and we lose friends simply by being on a different life path. In this stage, we cycle through a pattern of plan, fix, reassess, plan, fix, reassess, etc. Attempting to fix our emotions, we believe when we find the answer, everything will get better. For me, planning is my go-to for dealing with stress. As long as I am planning, there is hope for everything to be okay and I can avoid dealing with my feelings. Denial sounds like “My life won’t have to change. I won’t have to adjust my expectations.” And so, we don’t change what we do or how we do it and continue in denial. Anxiety asks “Can I handle it? What’s coming my way next?” Anxiety, in the right dose, can be helpful. If someone has no anxiety, they usually have no motivation. But when anxiety gets too high, it turns into despair and causes paralysis. An anxiety level that allows us to be highly motivated is the sweet spot. This is where we can dream again and engage in action. Fear triggers the fight in us, always looking for who or what we will have to fight for our child’s best?
Stage 2: Searching
Emotions include guilt, shame, depression, and anger. I find myself repeating, “This isn’t the way things were supposed to be.” Searching can be inward where we question what our child’s disability says about us and outward where we question what it says about our child. Guilt is a normal feeling that causes us to ask ourselves what did we do wrong, did we miss something, what can we do now. It’s when we hang onto the guilt and carry it around that it weighs us down. When I am weighed down by guilt, I say things like “If I was a good mom, I would….” And “I should be able to do…. like all the other moms.” Mom guilt is real! Shame is a form of self-loathing. Shame says there is something wrong with me to make my child like this. Dads tend to experience shame more. Brene Brown writes, “Parenting is a shame and judgement minefield.” Shame tends to come from fear of judgement or self-judgement. Depression can happen in this stage because reality is hitting us. We see the long road we and our child have in front of us and we’re not sure we can do it and sometimes we’re not sure if we want to. Anger is depicted as blowing up, raging, or throwing things, but more often it looks like blame. We control the outbursts but focus our anger on who we think is to blame and direct our anger there. When we see our kids having value and meaning as they are, our anger and comparison decrease because we aren’t trying to measure up to anyone or anything anymore.
Stage 3: Settled In
This is the stage we want to get to. Emotions experienced in this stage are hope and acceptance. We are more balanced in this stage. We might still be looking for an answer, but our hope does not depend on it. We are okay either way. In our families, hope looks like finding meaning in the life our children are living and finding meaning in our own life. Hope is a result of struggle. We have to do hard things in order to believe that we can do hard things. Struggles produce lessons learned useful for the continuing journey we are on. Acceptance is understanding and being okay with where we are. Through encouragement and building community around us and pointing each other towards possibilities, we are able to move toward acceptance. The challenger to acceptance is change- change in our season of life, change in diagnosis, change in progress from a setback. Here we are threatened again in survival mode and searching for answers. But when we have done it a few times, we can move more quickly through the stages, coming back to acceptance.
Stage 4: Separating
This stage is about finding the appropriate amount of independence. It is important as we move toward the transition of our children becoming adults. We need to encourage our children from a young age to have a picture of what the future might look like for them. Struggling to separate ourselves from our child sounds like “We have an appointment.” Or “We have a procedure next week.” Or “We have homework tonight.” It is easy to connect our identity to our child and their disability. It is important to remember that we have other roles such as spouse or significant other, parent to another child, friend, and unique individual. All of these roles in our life demand our attention and energy if we are to stay healthy.
Learning the Stages of Adaptation helps me see where I am and where I’ve been. It shows me the progress our family has made. It gives me a sense of belonging knowing that others have had these experiences too. I go easier on myself when I find myself back at survival, again. I am encouraged to keep dreaming. It helps me adjust my expectation of what a “good” life is. Instead of always trying to change things, I appreciate what I can and focus on what I have. And I am thankful for that.