Written by guest blogger, Kristin Macchi
It was a foreign place to me, although I wasn’t comfortable anywhere those days. Five strangers in a small room, watching our toddlers through a one-way mirror. Together for 9 hours a week.
Welcome to a new level of autism awareness.
We started talking. Our children’s inability to connect instantly connected us to each other. We began to relax during this precious time when we weren’t the ones sitting on the floor, trying desperately to engage.
Outside of that room, however, I was spinning from what was happening to my world. I wasn’t surprised by the diagnosis because he had always been quirky, but the implications of the label still shook me to my core. I leaned on my husband so hard I was afraid I would push him over, so I tried to be strong, but all I talked about was autism from the moment he walked in the door from work until we went to bed. I thought I would suffocate him. Although we talked non-stop about daily therapies, I wasn’t able to tell him about what was consuming me, that I was afraid I was going to fail our son. I felt like I was drowning. I went from being completely confident to hesitating about every decision I made.
That room with the one-way mirror became the only place I could breathe.
We continued to see each other after that year, and one by one our group grew. The social worker, the EMT, the PT. The restaurant owner. The police officer. The teacher. The life coach with the Irish brogue. They kept joining us.
We are D’MAC – Determined Moms of ASD Children (the “D” becomes a variable on cocktail nights). No matter how different we are, or who we were “before autism”, we are all the same. With each new mom, we hear the mantra. “I thought I was alone. Now I know I’m not.”
We talk about everything, or nothing at all. Our kids play together and do special gym/swim programs that the local Y set up after a meeting with our group. Many of our husbands regularly hang out together now. We have regular “meetings” at the aforementioned mom’s restaurant, it has become our clubhouse and our safe haven.
We are connected. To the core. We see or talk to each other on a daily basis. We are there for each other without hesitation. When my son was having side effects from his new medicine and his doctor wouldn’t respond to me, I frantically called a friend at 9:45 pm. She is dealing with serious medical issues, feeling awful and trying to hold it together for her children (more than one of whom have special needs) in addition to working and running her fledgling non-profit. She shouldn’t have even answered the phone, but she did, and she genuinely offered empathy, support and much needed advice. When I saw her the next day for lunch, she looked fabulous and gave me a huge smile, even though I knew that she felt horrible. She gave me a hug and barraged me with questions: “How is he today? Did you make the calls? Did you adjust the meds? Do you feel better?”
I knew when he got the diagnosis that my life was about to change. I just never expected it to be for the better. D’MAC has made this happen. I am able to share my thoughts confidently again, in fact I WANT to share my ideas to help my son and his friends. I want to help the parents of children who were diagnosed yesterday and will be tomorrow. I have found a strength I never knew I had inside me. I want other moms who feel like they are drowning to hear me, so they know that they are not alone. I am able to raise my voice clearly because I know that I have the strongest, most amazing group of women I’ve ever met standing by my side, ready to act. Without hesitation.
Kristin lives in Boston with her incredibly patient husband and two fantastic boys. James, 8, is charming and loyal, and makes friends one video game at a time. He also has an autism spectrum disorder. Johnny, 6, is often called Johnny Drama because of his clever wit and flair for the dramatic. She writes about her family’s journey at http://runningtobestill.blogspot.com.