May 02

Repost: Hello, My Name is Eve, part one: What were you expecting?


This repost is by Kay Marner, the co-editor of Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories. Through editing the book Kay found a pattern in the experience of parenting children with neurobehavioral special needs. She frames it as the experience of an everyparent, “Eve.”

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When I was pregnant with my first child, I spent untold hours with my nose in the book What to Expect When You’re Expecting.

Throughout my son Aaron’s first year of life, What to Expect the First Year was always close at hand, on the table by the rocking chair where I fed Aaron, sang to him, read to him, and rocked him to sleep for naps and bedtimes. Then, before I knew it, I’d switched to What to Expect the Toddler Years.

Sound familiar? Do you remember those days? Wasn’t it magically reassuring to follow along—and even read ahead–in books that explained every stage of development, and answered every possible question—sometimes before we knew to ask it? Continue reading

Oct 12

Meet Eve, Part 5: Blame & Shame

Welcome to part 5 of this series of posts about Eve, short for Everyparent of an “Easy to Love but Hard to Raise” Child. Eve is an archetype who represents the experience of raising a child with ADHD or other invisible disabilities. She’s revealed in the upcoming book, Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories, which is now available for pre-order direct from the publisher, DRT Press, at 30% off cover price, as well as from amazon.com. In parts 1 through 4 of this series we explored the following quotes from Eve, all of which reflect the pre-diagnosis stage of the special needs parenting experience, from when our children are infants, through the preschool years. Eve says:

“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.”

Continue reading

Oct 11

Are you Eve? Survey Results, Stage 2: Evaluation and Diagnosis.

Kay, my co-editor of Easy to Love but Hard to Raise, developed Eve based on the experiences our contributors shared when submitting essays for the book. Whether the parent-writers’ children were newly diagnosed or they were writing from a been-there-done-that perspective, their basic experiences were amazingly similar. Once Kay assembled all the manuscripts it was clear that while our children were astonishingly unique, our experiences as parents were not. The feelings were the same. The frustrations were the same. And the impact of raising our children in a world that doesn’t understand them, nor seems to care, is very much the same.

Here is part one of the results for “Are you Eve?,” our online survey examining the similarities and differences parents caring for children with neurological, emotional, and behavioral differences, the so-called “invisible” disabilities, face over time.  At the time I reported on the findings, 136 people had responded to the survey. Today, 3 weeks later, we’re up to 170 and the results have pretty much stayed the same. It will be interesting to know if the results continue to maintain the more people who respond.

The second section of our “Are you Eve?” survey focuses on the evaluation and diagnosis years. For many folks this was preschool and early elementary, but of course this time period varies for every family. Because this is a time that many children begin to struggle in school, school issues are also included in this section.

Continue reading

Sep 20

Survey results: Are you Eve? Yes, you are!

A week or so ago we posted a survey we created based on Eve, the archetype of a parent caring for a child with ‘invisible’ special needs like ADHD, PDD, FASD, OCD, PBD, and a myriad of other alphabet soup diagnoses that result in behavioral differences that make parenting these children a challenge.

Kay, my co-editor of Easy to Love but Hard to Raise, developed Eve based on the experiences our contributors shared when submitting essays for the book. Whether the parent-writers’ children were newly diagnosed or they were writing from a been-there-done-that perspective, their basic experiences were amazingly similar. Once Kay assembled all the manuscripts it was clear that while our children were astonishingly unique, our experiences as parents were not. The feelings were the same. The frustrations were the same. And the impact of raising our children in a world that doesn’t understand them, nor seems to care, is very much the same.

Eve is the name Kay gave to that sameness . Eve is short for Everyparent.

Eve was clearly present in the essays in our book, but we wanted to put it to th
e test and ask you – our readers, our community – if you agreed. Do the experiences of Eve speak to you? Are YOU Eve? Survey results are in – the answer was resoundingly YES. 136 of you participated in the survey over the last week and the vast majority agreed with the way we describe Eve, with a few, very interesting exceptions.

And hey – if you haven’t had a chance to take the survey yet, click here and get started. It won’t take you long, and we’re very interested in what you have to say.

Continue reading

Aug 10

HELLO! MY NAME IS: Eve, Part 3

In the second post in this series, I introduced Eve, the first-ever archetype of a parent of an “Easy to Love but Hard to Raise” (ETL) child; a child with ADHD or other conditions that take the already difficult job of parenting and add to the challenge. Eve is a construct representing the startling commonalities in stages and feelings that 35 parent-authors revealed in essays about their special needs parenting experience, for the upcoming book, Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories (DRT Press).

Eve’s reasons for being are:

  1. to show parents of ETL kids that they aren’t alone in their parenting journeys.
  2. to give those parents an idea of what life will likely be like for them—the parents—as their ETL children move through various ages and stages.
  3. to show parents of ETL kids that their feelings—even the dark and desperate ones—are normal, even expected.
  4. to give parents of ETL kids hope that their children will succeed—in their own ways, by an adjusted measure—in the future.
Jul 08

HELLO! My name is: Eve; Part 2; Infanthood

In my first post in this series, I promised to introduce you to Eve. I’ll do so, but first, a little background:

A few months back, a marketing company conducted online surveys on two ADHD-related social media venues that are popular with parents of kids with ADHD. One was a Facebook page; the other a blog that also has an active Facebook community. The surveys were designed to find out what the parents who frequent these sites are looking for. The answer came through loud and clear: “We want to feel like we’re not alone in dealing with ADHD.”

The upcoming book that inspired this website, Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories (www.drtpress.com) is also dedicated to providing what parents say they want most: to know that they’re not alone in their special-needs parenting journeys. In the book, 35 parents of “Easy to Love” (ETL) kids (many of whom also contribute to this blog) share triumphs, their mistakes, and their inner-most feelings; from the strength of their love, to the darker feelings that it’s hard to admit to having.

“Easy to Love but Hard to Raise” children are those with ADHD or other conditions that take the already difficult job of being a parent and add to the challenge.

Each of our parent-authors’ individual stories is a unique and personal gift to parent-readers. Those essays, alone, would have created a valuable book for parents. But, a completely unexpected “bonus” gift arose as the essays were merged into a collection. When the essays are read collectively certain patterns emerge; of feelings this brand of parent tends to experience throughout the various stages of parenting; from when we first imagine ourselves as parents, to when our children become adults. Together, these commonalities paint a fascinating portrait; an archetype, really, of Everyparent of an Easy to Love but… child; or Eve for short. In this series of posts, I’ll take you through Eve’s parenting experience, from her son Eli’s infancy, through his young adulthood.

Stage: Infancy

“The experience of parenting this child is nothing like I thought it would be.”

Here’s an excerpt from the Introduction to the book, Easy to Love but Hard to Raise.

“Like so many girls and young women, Eve has a fantasy of parenthood, formed during childhood play, and reinforced through years of romantic musings. Finally, it’s her turn to live the fantasy. Her son Eli is born (or adopted). Eve’s a mother!

Before long Eve is confused. Although she loves him, the experience of parenting this child is nothing like she thought it would be. Eli’s differences begin at birth. He’s colicky, impossible to console, overly sensitive to light and sound, and even to his parents’ touch. It seems as if he never sleeps. Eve thinks she must be doing something wrong, or her baby wouldn’t be so unhappy. She is always physically and emotionally exhausted. She privately mourns the loss of her long-held fantasy-motherhood.”

Many of our parent-authors described their ETL child’s infancy in just this way. Over and over they were told by their pediatricians that their babies were just “colicky.” Often, this was the first of many times that their parenting instincts (that something real and serious was going on) were discounted, causing them to begin to question their parenting abilities. In reality, it is likely that these babies, who were later discovered to have mental health conditions, were suffering from Sensory Processing Disorder, a condition that is commonly comorbid with ADHD and disorders on the autism spectrum.

Dr. Lucy Jane Miller, a top expert in Sensory Processing Disorder, founder and director of the STAR (Sensory Therapies And Research) Center, generously shared her knowledge for the book, saying, “If only I could get funding for a ‘fussy baby’ clinic! What is colic? What is a ‘fussy baby’ or a ‘difficult child?’ I think these likely are children with Sensory Processing Disorder….We…see many infants and toddlers, and the children who come to us at later ages invariably have in their histories early indicators of difficulties with processing sensation.” Dr. Miller says data shows that 40% of children with ADHD also have sensory processing challenges.

Kirk Martin, founder of CelebrateCalm.com, also served as an expert for the book. Martin says, “Most kids [with SPD] are never diagnosed, and some don’t have a full-blown diagnosable case; nevertheless, they struggle with sensory issues that cause issues in the classroom and at home. 85% of children with AD/HD who came to our camps [Martin, a behavioral therapist, hosted camps for challenging kids in his home] were affected by sensory issues of one kind or another. And I believe that anxiety and sensory issues cause more distractions and disruptions in the classroom than any other issue.”

Of course, Eve (and the parents she represents) doesn’t know that her child may have sensory processing issues at that time. She has no way of knowing that she is beginning a long, hard, special needs parenting journey.

Stay tuned…in the next post in this ongoing series Eve struggles to parent a challenging toddler.  

 

In May 2011, I introduced Eve to attendees at the annual conference of the Minnesota Association for Children’s Mental Health through a poster presentation. As part of the presentation I listed 23 quotes from Eve, and for each quote, asked parent-attendees to put an M & M in a cup labeled either “Agree” or “Disagree” to indicate if the quote matched their special needs parenting experience.

 

27 of 27 parents indicated that they agreed with the quote:

 

“The experience of parenting this child is nothing like I thought it would be.”

 

Do you agree or disagree with the statement: “Parenting this child is nothing like I thought it would be.”? Share your story! 

 

May 19

HELLO! My name is: Eve, Part One: What were you expecting?

When I was pregnant with my first child, I spent untold hours with my nose in the book What to Expect When You’re Expecting.

Throughout my son Aaron’s first year of life, What to Expect the First Year was always close at hand, on the table by the rocking chair where I fed Aaron, sang to him, read to him, and rocked him to sleep for naps and bedtimes. Then, before I knew it, I’d switched to What to Expect the Toddler Years.

Sound familiar? Do you remember those days? Wasn’t it magically reassuring to follow along—and even read ahead–in books that
explained every stage of development, and answered every possible question—sometimes before we knew to ask it?

Things were different with my second child. She gestated on the other side of the world, in the uterus of a stranger. She probably didn’t benefit from prenatal vitamins, and regular check-ups by a smart, charmingly shy young OB/GYN. She wasn’t carried to term, and delivered in a clean, modern hospital. She didn’t spend her “First Year” and “Toddler Years” cared for by loving parents, extended family, and Millie, at her in-home daycare, when Mom worked.

We adopted our second child, Natalie, from an orphanage in Russia, when she was 2 ½ years old. The stark realities of suspected prenatal exposure to alcohol, a premature, unattended birth, malnutrition, lack of stimulation, and disease contrasted bleakly with the happy, healthy, normal development of her big brother, our birth child. When we brought Natalie home, there was no way to know “What to Expect.” The guides to parenting this child, though insightful, described a process of development and an outcome—a reality–that I was unwilling to accept for my new daughter.

Eight years have passed since I began parenting this child, with no official guide. Aaron has continued to thrive; surpassing expected
developmental tasks at every stage. He plays baseball and basketball, gets good grades, and enjoys a great group of friends. Natalie has made amazing strides too, and is a loving, engaging, spitfire of a child. But, Natalie has ADHD with a handful of comorbid conditions. I research and network daily, in hopes of finding any useful parenting guidance at all, much less a comprehensive, reliable, accurate parenting guide.
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Your personal story is likely quite different from mine. But, if, like me, you are parenting a child with special needs, then, at some
point, your child also strayed significantly from typical developmental,behavioral, or academic norms. So you know how it feels to go without a guide, into uncharted parenting territory. Frightening, anxiety provoking. Desperate.  Exhausting. Confusing.

What if I were to tell you that there’s a woman you can turn to, who will share her personal story of parenting a child with special needs, and that her story will predict and explain the many feelings, stages, and experiences that you will likely go through in your special needs parenting journey, from the time your child is an infant through early adulthood. This woman, Eve, isn’t real—she’s an archetype; a construct–all the more “real” for having grown from the truths-in-common of 35 such parents who contributed their stories to our upcoming book Easy to Love but Hard to Raise. (http://www.drtpress.com/) How might you feel to “meet” this woman; Eve? Relieved. Reassured. Empowered. Less isolated and alone.

In the next post in the ongoing series, it will be my pleasure to introduce Eve. To be continued…

(This post first appeared on Spruce Kids {Blog}.)