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.

by Erin Faulkner

April 18, 2023

Go to your local bookstore or search on Amazon and you will find books to teach you just about anything. There are even books about parenting. The difference between a book about cooking and a book about parenting is that cooking is, for the most part, predictable and routine. If you have the skills and follow the recipe, you will most likely get good results.

But we can’t predict what will happen to our children. We can’t control their every move. As much as we try, we can’t always prevent them from getting sick or hurt. Sometimes, we make the right decisions. Sometimes, we make the wrong ones. There may even be times where we did nothing wrong, but we think that someone is to blame for what has happened or is happening to our child, so we blame ourselves.

When I was 24, I found out that I have a hereditary condition called Stickler Syndrome. It is a connective tissue disorder that affects vision, eye health, hearing, joints and sometimes the heart. There is a 50% chance that this condition will be passed down to each offspring. There is no way to know if it will happen or how severely the children will be affected. Six years later, I chose to have a child anyway. We knew before we left the hospital that my daughter had Stickler Syndrome, as well. Because I had the condition, at first, I didn’t feel the guilt. But as she got older, she started recognizing and feeling some of the unpleasantness associated with this condition: looking different due to her size and thick glasses, not being able to hear well and needing hearing aids, experiencing pain, and being injured easily. How could I have done this to her? Why did I choose to do this? Was I selfish? However, as much as I felt guilty and cried for her emotional and physical pain, I wouldn’t go back and change my decision. My love for her is greater than the guilt of the challenges I gave her.

I had guilt which then changed to acceptance. This led to forgiveness. An internet search of self-forgiveness defined it as “a positive attitudinal shift in the feelings, actions, and beliefs about the self, following a self-perceived transgression or wrongdoing committed by the self” I needed to change those negative feelings about myself into positive ones. Instead of feeling anger at myself for causing her suffering, I feel pride in her resilience. Instead of feeling guilty for my selfishness, I feel a sense of accomplishment for having navigated the many systems to get her where she is today - health, insurance, school.

One of the 8 Dimensions of Wellness is Emotional. One of the definitions is “being kind to yourself as you experience a wide range of emotions.” We don’t always get it right. We want to remember our mistakes, so that we learn from them. But don’t dwell on them, or you won’t be able to enjoy the future.

I will leave you with this quote by Lori Deschene that I coincidentally saw on Facebook this week.

"Forgive yourself and stop dwelling on everything you think you could have done better. The past is behind you, and it can only control you if you let it. So let go of what you should have done and focus on doing the best you can going forward."

by Erin Faulkner, Family Peer Supporter

March 28, 2023

When I was 4 years old, I got my first pair of hearing aids.  For the next 7 years, I hated them.  Everything was just so loud.  I would take them out often and several times, with my mother, have to dig them out of garbage cans because I accidentally threw them away.  We moved to Helena, MT when I was 10 years old.  My new audiologist realized that my hearing aids had never been set correctly for me.  Finally, I could hear comfortably.  It changed almost everything.  While it was now comfortable to wear hearing aids and felt wonderful to be able to hear conversations, I now was older and more aware that I was different. 

For many years after that, I wore my hair down as much as possible so that people couldn’t see that I was different.  I was embarrassed.  I didn’t know anyone else like me.  I was trying to keep from being and feeling isolated, though, thinking back, I think I isolated myself.  When I was 21, I transferred to an out-of-state college to study deaf education.  I finally met people like me – women my age who were hard-of-hearing.  I finally had the confidence to wear my hair up.  My mindset changed, as well.  I’d rather people know the truth rather than make their own assumptions about why I may not answer when they ask me a question.  I became proud of who I am. 

Fast forward 9 years to when I became a mom to a daughter with the same genetic condition as me.  I now had the opportunity to help guide her to, hopefully, make different decisions than I did.  Living in Great Falls, my daughter was fortunate to be able to attend the Montana School for the Deaf and Blind before she was even two years old.  Unlike me, she grew up with peers she could relate to.  Though she often will delay in telling people because she wants them to get to know her first, she is proud of who she is.  When she was 12, she was the Children’s Miracle Network Champion for Montana through Shodair Children’s Hospital.  At 16, she got her first tattoo, the CMN balloon with the year 2012, a conversation starter for something she is proud to talk about.  When she was 18, she got another larger tattoo, a DNA helix with the words Stickler Syndrome.  It’s a beautiful tattoo, not just aesthetically, but for what it stands for.  She has accepted and is proud of everything that she is. 

I believe that by accepting everything about us, we are better able to show people the things we really want them to see.  Kindness, intelligence, humor, perseverance, determination, resilience, morality.