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.
Part 1 of the survey asked people to agree or disagree with statements about the early years – the years before diagnosis. Kay calls this period “The Lost Fantasy of Parenthood,” which I think is a really apt description.
Statement 1: I can’t enjoy playgroup, storytime at the library, or other chances to spend time with other parents and kids, because my child’s behavior is too hard to manage.
Results: 74% of you either strongly agreed or agreed with this statement.
Comments to this question were revealing. Many people said it depended on the day, time, or mood of their child as to whether or not public events were successful. One parent said this: “Because my daughter has BiPolar, it’s a random thing. Some days she’s sweet and easy-going and ready to join the group activities. Other days she’s the epitome of “impossible”. Enclosed and familiar environments are “safer” than open strange places but I just never know how she’s going to be until we get there. I’m getting better at seeing her cues.”
Another said this: “Depends on the day and time… sometimes my children will sit nice… other times it is like pulling teeth. It also depends on how many other people are there.”
And for 11 out of the 136 respondants, this wasn’t an issue at all.
Statement 2: The experience of parenting this child is nothing like I thought it would be.
85% of you either strongly agreed, or agreed. Here’s what one of the commenters said: “I told my mother in law I feel like I got cheated with this parenting experience. It should not be THIS hard.”
Of the 7 of 136 folks who didn’t agree with this statement, some gave reasons, like this parent, who apparently went into her/his child’s adoption with eyes wide open: “It is not like parenting my biological kids,,, that`s for sure. But I did know what I was getting myself in to.” Or this one, who had no preconceived ideas about parenting at all: “My son was an unplanned pregnancy when I was 19 years old, so I had no expectations (or delusions) of what parenting would be like.”
Statement 3: I expected standard discipline tactics to work, but they just don’t. I seek out new parenting strategies, but they don’t work either.
A resounding 92% of you either agreed or strongly agreed with this statement. I know that this has been the most confounding thing about parenting my own ETL child – NOTHING seems to work. NOTHING. My only consolation is that I have an older son who is neurotypical and who’s been a pleasure to parent – very responsive to limits and privileges. He’s proof to me that I can do a good job at this parenting stuff, which is important, because many times I feel like the commenter who said this: “I am constantly questioning my parenting abilities and the boundaries we set as a result of the difficulty.” When it comes to my younger son, I completely agree.
Statement 4: Other adults—family, parents of other kids, even strangers in the grocery store—believe I’m the cause of my child’s behavioral problems.
72% of you either strongly agreed or agreed with this statement.
The remaining folks either had no problems with this or they’d developed strategies or attitudes to combat negative attitudes they might encounter, like only surrounding themselves with people who were familiar with and accepting of their child(ren): “I surround myself with supportive people. My own friends and family members have been very accepting of ADHD as a “chemical” imbalance in the brain ad not the fault of “bad” parenting. However, I’m aware of how the general population views conditions like ADHD.” Another commenter said this: “Because my previous children have ASD I already have a tight-knit group of friends who understand how difficult things can be and they are wholly supportive. I rarely am in situations where people openly judge me and that’s because I plan it that way. Occasionally in public I get “the look” but my defiant attitude keeps people from saying much.”
Statement 5: 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.
About 50% of you agreed with this statement and 50% didn’t. This was kind of a difficult statement to corroborate as it was 3 statements in one. Personally, I disagree with the first part of the statement, as I know that my child’s behavior is *despite* my efforts, but I agree with the 2nd part as well as the 3rd. At least one commenter agreed with me, saying “Although I do sometimes blame myself for not managing my daughter’s outbursts, etc … better. I can’t say I agree that it must be my fault. That said … I do question my instincts quite often and I am not the parent I thought or hoped I would be.” Another commenter spoke of the importance of remaining centered, which I think is excellent advice.
Statement 6: I give this child my all. I have no energy left for myself, my spouse, my other children.
81% of you either strongly agreed or agreed with this statement. 7 of 136 did not.
In the comments one theme kept raising its head: asking other people for help so that parents and other children in the family could get some time to themselves:
“I am lucky: I had already built a beautiful support network before she was born. But when I was raising my ASD boys I felt so alone and drained so much of the time. Those years taught me how to ask for help, which is so very important to raising an ETLHTR kid.”
“Things are so much quieter when she is out of the house. And I can spend time with my other kids, uninterrupted!”
Coming soon…Part 2 results: Evaluation and Diagnosis. For some of us this is a never-ending process…