I have a confession to make. I’m not proud of it.
When parents of children with mental illnesses I personally feel are less severe than Tim’s express how hard it is to raise their child, I sneer. It’s almost involuntary. I feel like shouting, “Ha! I’ll trade you my kid for a month, then we’ll see if you still feel like raising a kid with ADHD/OCD/PDD is hard!” I’m not proud of it, believe me. But it’s sort of like my own long-standing pity party, dismissing what I rationalize can’t be pain anywhere near is big as mine. I am hanging my head in shame as I write this, knowing, intellectually, it’s wrong. Save your emails. My brain absolutely agrees with you, even if my heart hasn’t quite caught up.
So when I was asked to review a book of stories written by parents of children with ADHD, OCD, PDD, and eating disorders, I sorta sneered at the idea of an entire book of parents writing essays about the struggles of raising their kids. But my brain knows two irrefutable truths – there aren’t enough stories out there about parents like this, and parents of kids with these types of diagnoses know better than nearly every doctor, therapist, and special education teacher on the planet what is best for their child. I can absolutely relate to that. So I sat down and read “Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories,” edited by Kay Marner and Adrienne Ehlert Bashista. And, after reading it, I think my heart is catching up with my head.
The book contains 32 essays written by real parents of real kids with an alphabet soup of diagnoses, interspersed with Q&A from experts of all types – doctors, therapists, social workers, and one of my favorite writers and advocates, Judith Warner. As I read the essays, I found my self nodding and, at times, audibly cheering, “yes!” under my breath as parents described the frustration, dispair, and, eventually, hope and successes of both their children and themselves. One such essay was by mom Lisa Randazzo, mom to a seven-year-old diagnosed with ADHD. She starts the essay full of joy that her son was selected for an award for an essay he’d written, only to have her joy turn to confusion, frustration, and anger at her son being placed on in-school suspension for a string of disruptive behaviors all tied to his condition. I cheered as she wrote about turning her anger into action. She turned into Mama Bear, educated the school administration, and saw her son receive that and many other awards for what school is supposed to be about – academic achievement – despite his, “scal[ing] the bathroom wall, runn[ing] around…when he is supposed to be seated, laugh[ing] too loud, sing[ing] too much…and disrupt[ing] instruction on numerous occasions with his silly antics.” Lisa learned her own strength as well. “I fell, recover, and get back on the bike.” Amen, sister, amen. My heart and my head completely relate to that.
And no – none of these parents are raising a child with Childhood Onset Schizophrena / Schizoaffective Disorder. And yes – my heart still wishes ADHD was the worst of Tim’s own alphabet soup of diagnoses. But these parents are still living a life very similar to mine. They are educating their children’s educators on how to educate their children. They are battling against family and friends who don’t understand how very different their lives are from the norm. They are agonizing over the decision to medicate or not medicate. They are frustrated, tired, and are trying to save relationships with spouses and their neurotypical kids. They are, well, me. And as much as I know you are all out there, living a similar life to mine, it’s nice, every once in a while, to read my thoughts in someone else’s voice, to remind me in black and white that I’m not in this alone. If my heart has learned anything through Tim’s childhood, it’s that parents like us need to stick together. After reading “Easy to Love,” I’m pretty sure my head can convince my heart that, no matter the brain-based disorder our children have, we are all part of the same community.
Wow! Thanks so much for this, Chrisa!
One of the main themes of the book is that we are not alone in this. No matter what our kids' diagnoses, the emotions of raising a child who has mental illness or neuro-behavioral special needs are remarkably the same. You really got what we were trying to say! And I'm sorry there was nothing in the book about childhood onset Schizophrenia/Schizo-Affective disorder! Maybe in the next book? It's about our kids and school! Go to drtpress.com for submission guidelines.
And while we're confessing base emotions about our kids, as the mom of a child with FASD (Fetal Alcohol Spectrum Disorder) I often have the same sneering response when I read about people with kids who have autism. It's not that it's any harder or easier to raise kids with autism vs. kids with FASD (it's somewhat the same, but also different), but the fact is that FASD is *more* common than autism but no one is aware of it! I live across the street from a nationally known summer camp for kids with autism, down the road from a nationally known, well-funded treatment center, and everyone and their brother seems to have one of those puzzle stickers on their car. Meanwhile there are no camps for kids with FASD, no treatment centers (and less than 10 studies on interventions, seriously!), and I had to make an awareness magnet for it myself!
I get pissed. Why don't people know about *my* kid's issues? About *my" family's struggles?
But then I take a breath and realize that we're all in this together, and the #1 thing I can take away from it is to learn from those autism parents who MADE people listen to them. It wasn't the government who decided to raise awareness – it was parents. Which is amazing, because while I know there's a long way to go in terms of helping families of people with autism, what they've done is also trailblazing and heroic. Something to emulate after I shake off my green monster!
I know, a little off the rail from your review, but I do love a true confession!
Confession is cathartic, isn't it? Thanks for the opportunity to read your book. And I'm going to consider a submission for your next!
This really struck a chord in me and I think I will have to get this book.
I am one of the moms with a kid with high functioning autism and I can see how your heart would be saying what the hell is she complaining about? But each of these illnesses/disorders comes with different challenges. Not unlike different physical illnesses come with different challenges. My mother has terminal cancer and so I feel selfish when I complain that my fibromyalgia is flaring up. When I told her that, she said, but you still have an illness. It's just with different challenges.
Adrienne, you are absolutely right that it took parent advocation to get to where we are with all the services autism kids can get now. And the awareness. But we had to scream our heads off. 20 years ago, when my oldest son was born, I had never even heard of it. I learned through living it every day and advocating for what was best for my youngest son. If I hadn't screamed loudly for what he needed, he might not be where he is today.
I have the same green monster when it comes to parents whose children are all neurotypical. It seems so unfair. But that is what life dealt us and I think that parents of children with autism (or any other disorder) are chosen to be parents of that child for a reason.
Chrissa, I sympathize so completely with what you are going through, even though it is not the same fight I have. I believe my fight is definitely easier than yours, but maybe my fight is just different. And we love these children no matter what.
Chelle, thanks. Hugs back! I know that we fight best when we band together. We need to do that more, all of us parents with kids with all kinds of brain disorders!
this post described the way i often feel. thank you for taking the time and effort to share, with this degree of honesty.