He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are a daily ritual. He's made it more complex as he's developed, but the basics are the same. There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until he is ready to be.

This is James, and this is our story.

Saturday, May 7, 2011

How D'MAC Found my Voice

It was a foreign place for me, although I admit I wasn't comfortable anywhere those days. 5 new moms in a small, narrow room, watching their toddlers through a one way mirror.  Stuck together for 3 hours at a time, 2x a week. Welcome to a new kind of Autism awareness. Our options were to a) obsess about what was going on in that room, or b) try to enjoy the precious time we had where we weren't the ones sitting on the floor, trying desperately to engage. We all immediately hit it off, and became close friends. We horrified people with our constant laughter and our seemingly aloof attitude at the room in front of us.  Just as quickly as we would erupt in giggles though, we would all become quiet and intense when we saw something important happen.  Even if it didn't involve our own child.

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 and what the books said was happening with my son, I wasn't able to tell him about what was consuming me, and how afraid I was that 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.  I thought that room with the one way mirror was the only place where I could speak my fears because those other 4 moms felt exactly like I did.

When the year was over, we moms continued to see each other, and one by one our group grew. The social worker, the EMT, the PT, the mom whose son was in my son's new class. The model- turned -restaurant owner. The police officer. The teacher.  The police officer's wife. The life coach whose Irish accent was so strong it took me a year to understand her. They kept joining us. Everyone was so different, but we were all the same. Each new mom looking around in awe, saying the same thing: "I thought I was the only one".

We are D'MAC - Determined Moms of ASD Children (well, since I'm being honest, the variable "D" also jokingly refers to Drinking because we can always find time at the drop of a hat to meet out for a cocktail - especially if a mom had a bad day). 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 (the summer club will be in one mom's backyard, with a trampoline for the kiddos and a tiki bar for us).

We get things done.  When we learned that our local Autism non-profit lost its funding for their annual family Christmas party one early December 2 years ago, we planned it. In an hour over a carafe of yummy sangria. Got the hall, a DJ, Santa, a great buffet and gifts for each child - all donated by local businesses and supporters. 40 kids had the best Christmas party ever that day. We joked that we should solve the budget crisis. This year we had about 80 kids and are talking about a bigger hall for next year.  "Our" restaurant recently held a drink special on Autism Awareness Day to raise money for the new Y program.  We are involved in our School system's Advisory Council and on multiple committees to improve the lives of children with disabilities and their families. City Councilors have become our champions and our friends - listening to our concerns and supporting us, and helping other moms who might feel alone to find us.  We speak in front of local and state officials to raise awareness and support our children and each other.

We are connected.  To the core.  Many of us see each other or talk on a daily basis. We are there for each other without hesitation. When my son was having side effects from his new medicine last week 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?"

We are D'MAC. Regardless of our children's ages or level of disability, if we are just getting the diagnosis or have been there for a decade, whatever our stance on vaccines, if our kids are lo-jacked because they bolt or cling to us for dear life, or whether we have that "warm, fuzzy type of Autism" or we are the ones that take the blows when our children can't control themselves, we understand each other, and we believe in each other. Without hesitation. With each new mom that joins our group, we hear the mantra. "I thought I was alone.  Now I know I'm not."

I knew when he got the diagnosis that my life was about to change.  I just never expected it to change 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 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.

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