I joined a book club about a year ago. I was nervous to go to my first meeting because this particular book club has been getting together for about 3 years, so their friendships are pretty solid. Also, I’m not good at pushing my way into group conversations, I hate feeling like an outsider, and I feel like a different person than the one they first met 3+ years ago. I knew some of the women from the short amount of time I spent in the “Mom’s Club” here in our town. I never really got a chance to make friends during my time in the Mom’s club because the Roc wouldn’t let me get close to anyone, literally. The events we attended were spent on the fringe of the crowd. He was easily upset and didn’t have an interest in doing whatever the other children were doing. I didn’t know at the time that he had autism. I faded away from the events because it was just too hard, and when I figured out that the Roc had autism, I quit going all together. It was way too hard. I felt so incredibly lonely during the the time after the Roc’s diagnosis. I poured all my energy into him, it was all I could do to keep moving forward. Once the Roc entered special ed preschool I started to meet other special needs moms, a whole other breed of parent, just like me. I continued to sporadically attend the Mom’s Club scrapbooking night but kept my mouth shut most of the time. I felt like I couldn’t relate to any of the moms anymore. But I didn’t want to cut myself off completely, just because these ladies had neurotypical children didn’t mean that I couldn’t be friends with them, and even though I felt on the outside, I could try to change that. And so a year ago I asked one of them if there was still room in the book club. I needed to get out more and knew that having two nights a month that were scheduled would help push me back into the world. I felt like I’d been in hiding since the diagnosis.
So I started going to the book club, and it felt strange. Suddenly I didn’t know what to say to these women. How could I describe what my life was like without bringing everyone down? Or the flip side of how could I convey the importance of the Roc finally calling me Mommy at 4 years old? The joy was so deep for me, but I worried it would be meaningless to them. They had no frame of reference. I didn’t know what to share. I didn’t relate to their struggles with their children and they certainly didn’t relate to mine. I didn’t know if I made them uncomfortable when I mentioned my son. I was and sometimes still am struggling mightily with the realities of my life. With autism. I didn’t know what to share, and so I didn’t share anything at all. Most of the time I kept my mouth shut.
Last week during our monthly get together we were talking about kiddie shows that make us cringe when someone joked that they told their son that Barney “was for slow kids” to keep him from watching it. Everyone at the table giggled. Except me. The conversation went on without me and I stayed frozen in that moment. And it stayed with me all night. I didn’t say anything though I thought of so many things I could have/should have said in that moment or afterward. I don’t know if she actually did say this to her son or if she was just trying to be funny, the wine was flowing that night (I don’t drink wine so I was stone cold sober) and maybe that had something to do with her joke. I do not think she really thought about what she said and all of it’s implications. She is a genuinely nice person, I think they all are, but it made me think.
Then the smockity frock uproar happened. And we in the autism community realized that we have much work to do to create understanding and compassion for our children.
And I decided it was time for me to open my mouth and speak to this small group of women. To start sharing what life is like at our house. The pain, the anguish, and the unbelievable joy that comes with raising the Roc. For them to know me, really know me, and to understand. I could keep to myself or I could branch out. I knew the only way that I could stay in the group was if I branched out and let them into my life. I thought about how to accomplish this because I certainly don’t want to speak AT them. I don’t want to give a speech. But I want to be able to discuss this life, my life. Then my Mom told me about a book she just read about a boy with autism and his dog that was very good. She said she cried in a few parts, especially when the author described her grief after the diagnosis, and she could see me, her daughter in the author’s words, and that gave me an idea. I ordered the book, waited anxiously to read it, and wasted no time when the book arrived and I had it in my hot little hands. It was around midnight when I finished the book and with tears slipping down my cheeks I logged onto my email. I knew what I was going to do and I drafted an email to my book club. The next morning I sent it:
Good Morning ladies,
I am hosting book club in May and I read a book that I really want for my pick, but it is not available in the library. I do not want people to have to buy this book and am suggesting that I transfer it between the 5 of you. I am totally willing to drive the book between people as you finish it. We have almost two months and the book is a little over 200 pages–so not big-I actually started it around 6 pm and finished it the same night.
The book is “A Friend Like Henry” by Nuala Gardner.
The blurb on the front cover reads: “The remarkable true story of an autistic boy and the dog that unlocked his world.”
I think all of you know that my 5 year old son, the Roc, has autism. While I do not want people to groan inwardly when they see me and think “Here comes Kim, her kid has autism and it’s all she talks about,” I do want people to understand. To have an understanding of what autism is and what it is like for our family. I want to share the joy of my son with you and know that you understand the significance of all the small things we celebrate at our house (for instance, the Roc can finally put on his own shoes and velcro them…that’s HUGE in our house. The process to teach him, for him to overcome his frustration, break it down into steps, and complete them on his own. HUGE.) I do not want people to be uncomfortable around me and I don’t want to hold back in sharing this integral part of my life with you all.
Please let me know what you think. I hope I am not being pushy, I just really want to share more of who I am and what my life is really like with you all.
I waited anxiously for the first reply and got just what I was hoping for:
I am totally open to reading and understanding more about autism. It is so prevalent now that it very easily could be any one of us in your shoes. Every one of us as moms and women should be able to share with each other and support each other and I am more than willing to do that, no matter what it is about. Kim, don’t ever feel like you have to hold stuff in because we will think you are “the autism mom” or whatever because I don’t feel like any of us would ever in a million years be like that.
I second that.
and then this:
I’m looking forward to talking about my life, about the Roc, about how far he has come and how hard he works everyday. The grief, the anguish, the unbelievable joy. I’m looking forward to hearing what they think of the book, what they learned about autism, and I hope they have questions for me. Because I’m looking forward to answering them.
I’m looking forward to spreading awareness.
I’m looking forward to sharing.
I’m looking forward to branching out and letting them in.
To be continued…