This past Sunday I moderated a panel discussion of the book, Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories. I co-edited and contributed to the book along with 32 other parent-writers. The panel was at a local bookstore and about 15 people showed up – friends and supporters of the writers, including my mom, and a handful of special needs parents.I was plowing through my presentation, starting with a nervous and slightly awkward introduction to the book and I got to the part where I talk about how the essays, the blog connected to the book, our Facebook page, and our brand new forum had been lifesavers for me in a time of intense stress, isolation, and darkness, proving to me that not only was I not alone in my feelings and worries and frustration and grief of trying to help my child with a neuro-behavioral disability, but I was actually surrounded by wonderful people who understood what I was going through and who could help…
And I started to cry.So embarrassing.
Part of it was insecurity and lack of sleep (my child’s been having some serious sleep issues lately), combined with anxiety about talking in front of an audience and add to that the frustration of having to pick out an outfit I could wear in front of an audience since I spend most of my day in yoga pants and stained sweatshirts and I’m never prepared for things like this. Oh – and the 10 lbs I’ve gained from too much sitting didn’t help much either.But mostly, I cried because I am truly touched by the community I’ve found through speaking out about my child’s special needs and my feelings about it. Overwhelmingly touched.
Three years ago when Kay, my co-editor/co-conspirator and I dreamed up an idea for a book I was in a personal pit. My son’s behavioral issues had reached a head, he hadn’t yet gotten the FASD (fetal alcohol spectrum disorder) diagnosis that has informed our treatment, intervention and parenting decisions since then, I was working 30 hours a week, my husband was working 100, my son’s first grade teacher sent a note home every single day detailing all the things he was doing wrong in school, my friends had started avoiding me because all I did was vent about how rotten my life was, my hair started to fall out and I gained 20 lbs in about 2 months flat without the pleasure of eating delicious foods to get there. Stress was making me sick. I felt alone and lonely and pretty hopeless.But then the essays for the book started coming in and I saw my feelings in other people’s stories. We started the blog, and I felt more connected, then the Facebook page started growing and growing and growing…and I realized not only was I not alone, that there were thousands, probably millions, of other moms out there just like me – moms who were puzzled by their children’s behaviors, were trying everything they could think of to help their kids, were taking them to specialists and doctors and therapists and trying dietary changes and new routines and behavior modifications from every book they could read about and still were not seeing the changes they wanted to see. These were moms who felt judged by friends and family and even random people in the grocery store, angry from dealing with unforgiving schools that treated them as if they were the enemy, and just plain exhausted from having to think of all of this stuff all of the time. Moms who never ever got a break because the minute they got a handle on one thing – maybe wrapping their heads around giving their kids medication, for example – something new started up. Medication side effects. Problems with friends. A new grade, a new teacher, a new school year. New challenges.
So the community grew. And I felt less alone. I made some life changes, including quitting my job and treating my illness. My son got out of the classroom that was so difficult for him. And the community grew! Because I was able to worry and vent to people who knew where I was coming from, I was able to reconnect with my real-life friends. Because I was getting lots of good, seasoned advice, I was able to start solving some of my child’s problems. I felt empowered. No longer lonely or isolated! All because I found community!I got out of my pit. And now I help other people get out of their own pits! It’s such a terrible place to be.
If you would like to be part of our community, please connect! Our blog is Easy to Love but Hard to Raise, on Facebook we’re at easytolovekids. On Twitter we’re at #easytolovebut, and we have a brand new forum so that people can post about their children’s issues and their own problems with a little more privacy than is afforded on Facebook.