Guest Expert

5 Stages of the Special Needs Parent

Kay Marner

When I co-edited Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories, with Adrienne Ehlert Bashista, I learned some nuggets of wisdom that are very close to my heart.

Easy to Love but Hard to Raise is a book of essays written by parents of kids with ADHD, autism spectrum disorders, and many other mental health conditions, developmental disabilities, and behavior disorders, about what it's really like to raise kids with “invisible” disabilities. While editing the essays for the book, I was fascinated to note many similarities in the feelings and experiences revealed by the book's 32 parent-authors. I combined those common truths to create a composite character, Eve, a fictional mother who captures and describes the typical course of the special needs parenting journey.

Outlined below are the five distinct stages of the special needs parenting experience, from infanthood through young adulthood, and the feelings and dilemmas typical of each stage, as personified by Eve, and stated in her words.

Eve's story offers a wonderful structure to help organize your feelings and thoughts about parenting a child with ADHD or other invisible special needs. I want to share this structure with you, and offer some suggestions for putting it to use.

Stage 1
Pre-diagnosis: infanthood - preschool

Central theme: lost fantasy of parenthood

  • “The experience of parenting this child is nothing like I thought it would be.”
  • “I can't enjoy playgroup, story time at the library or other chances to spend time with other parents and kids, because my child's behavior is too hard to manage.”
  • “I expected standard discipline tactics to work, but they just don't. I seek out new parenting strategies, but they don't work either.”
  • Other adults—family, parents of other kids, even strangers in the grocery store—believe I'm the cause of my child's behavioral problems.”
  • “My child's behavior problems must be my fault. I've stopped trusting my parenting instincts. I'm not the calm, firm but loving parent I thought I would be.”
  • “I give this child my all. I have no energy left for myself, my spouse or my other children.”

Stage 2 diagnosis: preschool - early elementary

Central theme: consumed with research

  • “If we can just put a name to this problem, then we'll be able to fix it.”
  • “In the back of my mind I expected this diagnosis, so why is it so hard to hear it?”
  • “If I research and learn enough, I'll find a solution to my child's problems.”
  • “Intellectually, I can accept that my child needs medication, but my feelings about medicating him are complex and often painful.”

Stage 3 Learning as we go: early elementary - middle school

Central theme:“I ache for my child when…”

  •  “I dread hearing the phone ring, because I'm afraid it's another call from school.”
  •  “It hurts so much that my child doesn't have friends; I ache for him when he's excluded, teased or bullied.”
  • “I agree with my child's primary diagnosis, but my gut tells me there's more going on than a simple case of xxxx.”

Stage 4 Learning as we go: middle school – high school

Central theme: moving toward acceptance & self-assurance, finding support

  •  “I've regained some confidence in myself as a parent, if only by learning that my child's problems are brain-based; they are not my fault.
  •  “I've met a few other parents (online or in person) whose kids have similar issues. These people get it. They know how it feels to be judged, so they are not about to judge others.”
  •  “I'm no longer trying to ‘fix' my child's problems, to ‘cure' his condition. Instead, I focus on finding coping skills and tools to help him.”
  •  “I've learned that each small accomplishment deserves a celebration.”
  •  “I worry constantly about my child's future.”

Stage 5 Looking back: young adulthood

Central theme: “Who would have thought…?”

  • “My child still has symptoms to manage, but he is managing.”
  •  “I now see that my child was coming into his own, finding his niche, starting to have confidence in himself, before I began to have confidence in him.”
  •  “I revised my expectations for my child, and by those standards, my child is a success. I'm proud of him.”

(If you want to know Eve better, read Eve's life story -- click on this link, and then on the book cover, and read the Introduction to our book for free).

Here are some ideas of how you can use Eve's story to help you make sense of your own life experiences:

1. Use the first person quotes from Eve (above) as prompts for processing your experience. Working quote by quote, or stage by stage, write about the following in your journal, or talk them out with a friend, coach, therapist, or in a support group:

  1. Compare and contrast your own feelings and experiences to Eve's. How are they similar and how are they different?
  2. Write a quote or series of quotes in your own words that more accurately describes your feelings at various stages.
  3. Look ahead to a stage or stages that are yet to come as your child matures. What about those upcoming stages make you hopeful? What about them scares you? What can you learn from Eve's experience that will help you get to a place of acceptance, pride, and confidence sooner?

2. Share Eve's story and the stages listed here with a family member, teacher, neighbor, or other adult whom you feel unfairly judges your parenting skills, or misunderstands your child's behavior. Explain that although your situation differs significantly from that of parents raising “typical” kids, your experience is quite predictable among parents of kids with special needs, as are the reactions of adults around you. This approach might start a good discussion, or at least prompt some people to think twice before criticizing your parenting skills, or your child's behavior.

Since writing our book, Eve's story has been a constant guide for me in my growth as the parent of a special needs child, and I hope you find her story useful for you, as well. I'd love to hear about how you employ “Eve” to organize your special needs parenting-related thoughts, feelings, and experiences. Please share your experiences in the comments section below.

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