I was asked this summer to take a look at a wonderful, wonderful new book, Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories, by Kay Marner and Adrienne Ehlert Bashista. Wow. I started it and could not put it down. It's that good, that piercing, that important! I've read a gajillion books about Sensory Processing Disorder, about "Difficult Children", about Parenting. This book was about me, about my feelings, about my struggles, about my life. I didn't write it, but all of my cronies in this invisible special needs battle did. It was so liberating to know that I wasn't alone.
And, today, I am honored to be hosting one of the authors of this book on my blog, writing about that loneliness that she is familiar with, as a Mama to a super-special kiddo.
My very best friends are the moms I met through the playgroup I went to when my now 13-year-old was a baby. Back then I was a new-to-staying-at-home stay-at-home mom, living in a town in which I’d resided for 5 years, but also a place where I didn’t have a single friend. I’d gone to graduate school with a group of transient folks then had gotten a job an hour from my house – so found myself completely isolated once I brought my child home from the hospital.
But luckily there were many of us in the same boat, and we thankfully discovered each other at a neighborhood park when our babies were barely old enough to walk.
These women soon became my de facto support group, offering child care advice, a shoulder to cry on, a resource guide, a babysitting co-op, and soon, a network of friends. From that original playgroup I now have best friends.
When we adopted our second child came along many of them were already past the baby stage, so despite our weekly day-time playgroups changing into monthly after-school get-togethers, not much changed for a while…until we all started going back to work and seeing each other less. This is the way things go, I suppose. We were still close and saw each other regularly and they remained my main support – at least, until things started to go south with my younger son. His behavior issues, poor sleep, school troubles and oppositionality soon put us on the therapy-doctor-search for diagnosis-figuring out medication-behavior mods treadmill that so many moms and dads of kids with invisible special needs like ADHD, autism, OCD, SPD, PDD, PBD, FASD, and others can find themselves on.
We were seriously overwhelmed. It was all I could think about and talk about for a while…and soon I started to feel like my friends didn’t want to listen.
I know I was like a broken record. I know much of what we were going through was foreign to them. I know now (because we’ve since talked about it – they did not say these things to my face at the time) that many of them were thinking things like “I can’t BELIEVE they’d give their child medication,” “He’s just a boy, cut him some slack,” and “Something is wrong with their parenting.” And I’m sure my constant complaining and harping on my child’s difficulties was hard to hear. Especially since, at the time, I didn’t have a good handle on why he behaved the way he did. For many years I felt that the behaviors my son exhibited due to his pre-natal alcohol exposure were somehow on purpose. I punished him for them as if he had control over them and could change. I didn’t understand him and resented him for all the difficulties we were experiencing as a family. I became very bitter. And I know that was hard to be around.
They weren’t in our shoes. I get it. All they heard was parents on the edge, complaining about being on the edge and I know they suspected that we were making a lot of it up.
So – whether this actually happened or I made it happen or in my grief and distress I imagined it happening – we began to drift apart.
At the same time this was happening I decided to quit my job because I wasn’t able to work full-time and take care of my family. Although my job was demanding, I enjoyed it. Quitting was necessary, but it meant further isolation. My husband started working more to help boost our finances – so even more isolation. And we still didn’t understand what was going on with our son, so were were constantly frustrated with him and felt like we couldn’t take him anywhere because of he’d get overwhelmed quickly, act out, call us names, and behave in a way we couldn’t control and which embarrassed us. People judged us in public, made comments about our parenting, and every new interaction was an occasion where we had to explain and justify his sometimes outrageous behavior. His social skills with other kids were nonexistent. We even had several unpleasant incidents with our family. Staying home by ourselves began to be much easier than steeling ourselves to go out. Add to that our battle with his school (increased frustration and alienation) and I’m sure you can see that we were headed nowhere good, and fast.
But then something amazing happened. Kay Marner, another special needs mom I’d met (on-line) through a blog I used to write for adoption.com decided to do a book together about the experiences of parents like us: people parenting kids with “invisible” special needs. We weren’t really sure what we’d get when we put out the call for participation, but it was through the process of connecting with moms like us that I realized something profound: although I felt very, very alone in my everyday life, in reality there were millions of people just like me out in the world. Perhaps they, too, felt like they could never leave the house, or they, too, had to quit a job they enjoyed because their children’s needs were too much, or they felt that their friends, too, were tired of them listening to them obsess over their child’s disabilities. They were out there. They were sending us essays. And once we started the blog and the Facebook page, we could connect.
For me, through connecting to all these people like me out in the world, I started re-connecting with my in-person friends. I had an outlet for all my self-centered worries and fears and questions now, which allowed me to think of them, their families, and get beyond my own issues. I had people I could brainstorm with who could help me strategize about how to help my child with his social issues and with grandparents who didn’t quite get it, and to learn how to be more pro-active when it came to school and new situations. I didn’t have to pester my other friends to help me with things they didn’t know about and I could enjoy them once again, and they could enjoy me!
So, what’s the moral to the story? That as parents of children with special needs, especially the kind that manifests themselves behaviorally, aren’t really alone. There are other people just like you out there but you may have to search them out – and when you do, it’s worth it. 100%!
Adrienne Ehlert Bashista is the co-editor of Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories, and she maintains the blog and the Facebook page of the same name. Her next book is Easy to Love but Hard to Teach, and she’s got a couple more writing projects in the works, including one on fetal alcohol spectrum disorder (FASD) and one on homeschooling children with special needs. She lives in central North Carolina with her husband, two sons, two dogs, and a bunch of chickens.
If you are a Mama to a special kiddo, if you know a Mama to a special needs kiddo, if you love a Mama of a special needs kiddo, you need to get this book. The loneliness is isolating, but it doesn't have to be.