How Special Needs Parents Can Break Free from Guilt and Shame

“If only I had cut back on my hours at my stressful job when I was pregnant, my blood pressure might not have spiked.”

“I should be advocating for more services.”

“I need to be doing more.”

“I can’t believe I just thought that.”

“I should have listened to my gut and spoken up to the doctor.”

“If only we had been watching him more closely…”

Sound familiar? Ruminating on shameful thoughts often plagues special needs parents. We can become caught in a never-ending cycle of beating ourselves up. But we don’t have to feel this way. There are practical steps we can take in order to find freedom. I hope that you find peace and healing through these steps to breaking free from guilt and shame.

“If only we had begun therapies sooner…”

Sources of Guilt and Shame

Let’s explore some of the reasons that special needs parents experience guilt and shame.

• Feelings of inadequacy: Needing help with caring for our children (doctors, therapists, nursing, respite, etc.)
• Regret: Looking back wishing we had done things differently
• Self-blame: Blaming ourselves for our children’s health or developmental conditions
• Child’s needs: Unable to financially provide for or drive our children to every appointment that could help them
• Interventions: Skipping therapy exercises at home
• Grief: Feeling loss and disappointment
• Siblings: As hard as we intentionally work to also focus on our other children’s needs, the reality is our children with disabilities require more of our time and attention.
• Spiritual: Questioning our faith or feeling angry with God

It can feel impossible to give all of our children all of the attention that they need.

Guilt: Justified and Unjustified

The feeling of guilt is functional. Guilt sends us the message that we have either done something or not done something that goes against our values. But there’s justified guilt, and there’s unjustified guilt (Linehan, 2015).

Justified Guilt

When a person willingly harms or neglects another person, then feeling guilty prompts them to apologize and right the wrong. Here are some extreme general examples of justified guilt:

• A parent knowingly neglecting or harming their child’s physical, emotional, or psychological needs
• Intentionally saying something hurtful to another person
• Stealing
• Neglecting or abusing an elderly person
• Thinking about or acting on murder

Those are extreme examples. Here are some reasons that special needs parents could experience justified guilt:

• Intentionally going against medical advice resulting in harm to their child
• Neglecting their child’s medical care at home or not seeking treatment when needed
• Losing their patience and screaming and throwing things which harms their child emotionally
• Physically abusing their child
• Having thoughts about harming their child (or acting on those thoughts)

Gray Areas

Depending on your faith beliefs and values, these three situations may create justified guilt for you:

• Experiencing strong emotions like bitterness, anger, and envy
• Having negative thoughts about your child’s survival or condition
• Questioning God’s plan

Unjustified Guilt

Now, let’s look at situations that can prompt special needs parents to feel unjustified guilt and even shame. As you read the examples, consider how guilt is not justified.

• Accidently forgetting a doctor’s appointment
• Sometimes skipping home therapy exercises
• Beginning an ordered medical treatment that worsens your child’s condition
• Being unaware of your child’s medical condition or developmental disorder
• Processing thoughts of loss, trauma, stress, and grief
• Having a difficult time coping
• Experiencing anxiety or depression
• Taking time to care for yourself
• Not making all the needed phone calls or emails one day

The Lie of Shame

The thing about shame is that it serves no purpose. Shame imprisons us in the urge to hide our thoughts and believe that we are fundamentally flawed or bad. We feel shameful when we internalize our feelings of guilt for something that we’ve done or not done (justified or unjustified), to saying something about ourselves. For example:

Shame: “How could I have forgotten that important appointment?” = “I’m a bad mom.”

Guilt and Self-Compassion: “I can’t believe I forgot that appointment.” = “I have so much going on I’m not surprised it slipped my mind. It’ll be okay. I’ll reschedule it.”

Shame: “I just wondered if we would have been better off if our daughter hadn’t survived.” = “I’m a terrible person.”

Guilt and Self-Compassion: “My life is incredibly hard, and my daughter is suffering.” = “It makes sense I might wonder if it would be better if we weren’t suffering.”

There’s a subtle but powerful difference in these two ways of thinking. Even if the feeling of guilt is justified, that doesn’t equal that we’re an evil person. Here’s another example: We are taught to say to our children, “You made a bad choice. That doesn’t mean you’re a bad boy.”

We make mistakes. No one is perfect. With all that we have on our plates, things are going to get dropped. That doesn’t mean that we’re bad parents. When we tell ourselves that our actions or inactions make us bad parents, then we begin to feel shame.

“Would it have been better if she hadn’t survived? How can I think this? I’m a horrible person.”

Let’s look at this example. I’ll never forget sitting in my first meeting with other parents who have children with Bethany Grace’s disorder. A father began speaking. “Would it have been better if my son hadn’t survived? I wish that he had been born typical and healthy.”

My heart skipped a beat. Someone else has had these horrible thoughts?

Then he continued, “You’re not the only special needs parent that has had these thoughts. It’s common to process these questions and emotions while grieving.”

This was a breakthrough moment for me.

That day I learned that special needs parents often experience painful and difficult thoughts, emotions, and agonizing questions that are a part of the grieving process.

Breaking Out of the Cycle

Follow these steps to breaking free from guilt and shame. This process can be powerful and transformative when praying through these steps, asking for God’s wisdom, guidance, grace, and forgiveness. Begin the journey to freedom today.

Step One: Identify the Thought

Identify the thought that’s causing you to feel guilt and/or shame. What did you do or say? What did you not do or say? Are you comparing your situation to someone else’s?

Step Two: Determine If It’s Justified or Unjustified

Is the guilt justified (i.e., you did something against your values and willingly harmed another person)?

Then make a mends. 1. Ask for and receive forgiveness from God. 2. Ask for forgiveness from the person and rectify the situation. 3. Forgive yourself.

Or is the guilt unjustified (i.e., you acted on the information that you had, did your best, or made the best decision that you possibly could)? Then reframe your thoughts about the situation.

Instead of, “I made a horrible decision,” say to yourself, “I made the best decision based on the information and knowledge that I had at the time. I acted with my child’s best interest in mind.”

Step Three: Discern If It’s Guilt or Shame

Is the thought about something you did or didn’t do (Guilt)? Or is the thought saying something negative about you as a person (Shame)?

Now, if you’re still feeling bad about yourself, identify the statement that you’re declaring about yourself as a person. This is shame.

Instead of telling yourself, “I lost my patience and yelled. I’m a terrible mom,” say to yourself, “I’m having difficulty staying patient and not getting frustrated. It might help to learn some new coping skills. I’m doing the best that I can, and I’m a good mom.”

Step Four: Talk to Others

Opening up to a trusted friend, another parent, or pastoral counselor can bring you great relief and reassurance. Ask someone to pray with you and to help you process your thoughts and emotions. Bringing your feelings of guilt out into the open will help free you from its grip.

Seek Help: If your feelings of guilt and shame are causing you to experience symptoms of anxiety or depression, seek a mental health consultation. Therapy can be very helpful in guiding you in developing healthier thought patterns. Find a therapist at Psychology Today.

What advice do you have for other parents to help them break free from guilt and shame?

Make sure to leave your ideas in the comments.

Read How to Heal When You’re Angry at God

Learn more about Finding Hope When Caregiving Stress Leads to Faith and Mental Health Struggles.

Learn more about Special Needs Parenting and Mental Health.

Reference

Linehan, Marsha M. (2015) DBT Skills Training Handouts and Worksheets, 2nd Edition. Guilford Press: New York.

 *The contents of this article are intended for informational purposes only and not a substitute for seeking professional mental health or medical advice.

Kristin Faith Evans, MA, MS, LMSW

Kristin is an author, a speaker, a mental health therapist, and a special needs mom. Her greatest passion is walking with others on their journey to deeper faith and mental health wholeness. As a Licensed Masters Social Worker and with her Masters in Christian Spiritual Formation, she has served in youth, camping, and retreat ministries and is experienced in Christian counseling, couples and family therapy, substance abuse treatment, and crisis counseling. Kristin lives with her husband, Todd, and their two children in the Nashville, TN area. When she is not enjoying life with her family, writing or working with clients, you can find Kristin training for triathlons, reading, or simply being out in nature. Visit her author website at www.KristinFaithEvans.com