The Spectrum Is Full Circle: My Journey as an Autism Mom
by Parent Co.November 10, 2017
This is a submission in our monthly contest. November’s theme is Gratitude. One year ago, I existed in an pre-autism diagnosis ulterior universe. I had a two-year-old son who had only said “ball” and “hi” a handful of times, and a newborn baby. I knew that my eldest, Henry, was a “late-talker.” I just didn’t know why, yet. I knew that I was seriously struggling as a mother; I just didn’t know why, yet. I had so many unanswered questions. When too many unknowns land in my lap in the same moment, I always find myself looking up to the sky, and asking, “Is anyone there? Can anyone help me?” Despite 10 years of Catholic school, I do not consider myself to be religious at all, and neither would anyone else. But this upward gaze seems to be an instinctive act of desperation that I engage in when the weight of the unanswered questions becomes too heavy for me to carry. Henry was also struggling, and with more than just his speech development. Both of us were adjusting to life with a new baby, and our transition processes were far from graceful. In an attempt to spend some quality one-on-one time with him, I took him to McDonald’s while my mom cared for the baby. Upon entering, I was immediately dismayed to see another mother and her twin toddler sons playing in the back play area. The mom was quietly eating her salad while watching her sons play. Why was I so antisocial with other moms? Would I have to chat with her? I didn’t want to try to explain why my son was not responding to her twin boys of the same age when they inevitably attempt to interact with him. I was tired of explaining. I didn’t have the answer. Constantly attempting to explain something that you don’t understand is exhausting. I was tense as Henry approached the entrance to a maze of plastic tubes that wrapped and wound across the entire room. I wanted him to play, engage, and have fun. But I did not want him to get stuck, get anxious, claustrophobic, or cornered by the other children. I just had a 10-pound baby; I could NOT fit up there. But I let him go, as all parents must do at points throughout their journeys. But I watched him like a hawk. I envied the other mother, sitting there, eating her salad. She was so relaxed, and she eats healthy too. My envy slowly grew into a resentful inner dialogue. This woman has no idea. Must be nice. But then something happened. One of her sons became upset. My gaze shifted from the snooty mom and her salad to the twin boys. While one was playing nicely in the ball house, the other was suddenly upset as he investigated the rooms tables and benches. The mom went to her upset son, comforted him, and after a moment came back to sit down. She turned toward me, looked me straight in the eye, and said, “He is autistic.” That was it. No apology offered, yet she spoke with all the warmth in the world. With three words, my snooty competitor just became my new hero. I was not yet in a position to even suggest in return that my son was potentially autistic. Had the possibility occurred to me? Yes. But I hadn’t been offered any medical advice pointing toward that conclusion. To the contrary, I had been told that Henry “looked fine” by medical professionals. And while I knew that an autism diagnosis was possible, I was not emotionally ready to verbalize my concern, especially to a stranger. But deep down, I knew. With our mom guards down, we chatted nicely for a few short minutes until her husband called. He wouldn’t be on time to get the kids and she wasn’t prepared to have them there for more than a few minutes. She hung up, stressed and upset. I knew the feeling. It was perfect timing for a poopy diaper. And she was out of diapers. I gave her a few and a pack of wipes before gathering our things and heading home. She was so grateful. And so was I, I just didn’t know why yet. I continued to think about our interaction throughout the next few days, weeks, months. What was it about her that stuck with me? Should my son be diagnosed as autistic, would I ever be as comfortable, confident, and unapologetic as she was about it? Would I be able to straddle that fine line between honesty and defensiveness? Would I exude grace and dignity as a mother to an autistic child? Will I ever start ordering salad? The questions were endless; they still are. A year has passed, and this mother’s words have stuck with me. “He is autistic.” I have stumbled many times over the phrase since my son’s diagnosis. It’s been a rough year, and not just because of my son’s diagnosis. Adjusting to two kids, my husband’s work injury, quitting my job to be available for speech, occupational, and behavior therapies. That’s my new job. And I’m okay with it, but it doesn’t pay the bills. So I got together with my girlfriend, who is also a special needs mama, to wallow in the trials and tribulations of our current circumstances and watch the kids find innovative and new ways to endanger themselves in a child-friendly environment. That’s right, McDonald’s folks. I might sound like a huge Big Mac fan, but the real motivations behind our dining preference are quite simple; saving money, and keeping it easy. I’m not going to pay $12 to go somewhere and leave 15 minutes later, especially when I’m broke. We had recently missed my friend’s son’s birthday party because both of my boys were sick, so I brought along the birthday present to our playdate. As I parked the car I took a deep breath and looked back at the two eager boys behind me. I had a battle to choose; leave the gift in the car and deal with a meltdown now, or bring it with us inside and deal with a meltdown in 10 minutes. While neither option seemed ideal, I knew that leaving the gift in the car would hopefully result in a shorter meltdown than bringing it inside would. So, I threw my wallet into the diaper bag and began to unload both kids from the car. Mind you, neither of my children can be on foot without at least holding my hand for safety. Especially considering that we were in a busy parking lot in a strip mall outside of McDonald’s. We didn’t get very far. Henry was pissed. I thought if I could just get him inside McDonald’s, get him some fries and to the play area, we would be alright. With a 35-pound one-year-old on my hip, and the diaper bag on my shoulder, I tried to get Henry to hold my hand and walk the 20 feet across traffic toward the entrance. It was not happening. These are the moments that I literally stare up at the sky and ask, “What’s the punchline God? What am I missing? What do you want me to do here?" My now underweight, stressed out, 110-pound self threw Henry up onto my other hip, and step by step, I carried the 75-pound load toward the swinging doors. It was so close; it was so, so far away. I made it through the line of cars pulling into the parking lot and as I went to open the door with my not-so-free hand, Henry blew. He was not going in there without that present. He was not going in there at all. Mcdonald’s was packed. I couldn’t believe my eyes. Summer was over and it was a weekday! I looked up from the mayhem in my arms, Henry resisting the sensory overload that waited inside, and James shifting the weight of his upper body towards the swinging doors, eager to go inside, and saw the same one hundred faces I had seen one hundred times before; blank, not judging, not sympathetic, just blank. I thought, “How can NONE of these people be running over to help me right now? ” I looked at them in desperation. Embarrassed, tired, physically about to keel over. But I couldn’t give up. I had two boys that would run into traffic if for even a moment I accepted defeat. So I fought harder. As I stood in the doorway, with the eyes of a hundred blank stares burning into the back of my head, I put the boys down and held them both as I tried to comfort Henry. The staring didn’t help. Neither did the lights or the loud noises vibrating through the now closed doors. I would have to head back toward the car. I didn’t know if I physically had the strength for the journey. I begun to look upward with desperation yet again, when the double doors swung open, and I tried to inch all three of us out of the way. It was a older man, and he wasn’t just passing by. He came out to help me. The second he paused to offer us assistance, I lost the grasp of my one year old’s hand and we were still in a busy parking lot. Henry squirmed and while pointing to James, I shouted to the man, “Do you have him?” In an instant he swooped him up and helped me herd them both inside. We made it. I turned to the man, and as I thanked him, I noticed his tattered clothing and stubbly beard. He was homeless. And he was the only person out of literally a hundred people who came to help me. I cry as I write this knowing that he very well could have saved my son’s life. I thanked him profusely, gathered myself, and headed to the back play area to meet my girlfriend and her son, who were unaware of the chaos that ensued just moments before. My friend and I had our usual chaotic lunch, spent tracking the kids and barely getting a word in edgewise, and after we were beat and the kids were beginning to spiral we headed out. I didn’t see the man who had helped us, and with the journey to the car ahead, I had to remain focused. I said goodbye to our friends and loaded the kids in the car. I looked up to the sky with relief and whispered an internal thank you, when out of nowhere the man who had helped us approached me. He wasn’t there to ask for money, and I didn’t have any cash to give him. I only had my maxed-out credit cards. But I would thank him again, profusely; it was all that I could do in that moment. So I said thank you, and afterward, I looked him straight in the eye, and with all the warmth in the world I said, “He is autistic.” I heard the words aloud. They were familiar. I looked over at the Mcdonald’s sign and I had a moment of déjà vu. I had been here before. Some say that déjà vu is the universe telling you that you’re in the right place at the right time. I felt like the universe was telling me far more than that, but I certainly agreed that I was in the right place at the right time. I couldn’t help but think that the homeless man who had helped me was an angel sent to protect me and my children from a potential tragedy that I refuse to even attempt to fathom. As the deja vu dissipated, two profound realizations began to run through my soul like a severe case of goosebumps. I realized that perhaps the reason this man was the only person to come and offer us his kindness was because he knew exactly how I felt as I stood outside those doors looking in. He knew what it felt like to be judged, stared at, and passed by; he knew what it felt like to be truly desperate for just an ounce of humanity from his fellows. We had more in common than I would have ever believed a mere hour before. And we had even more in common than I had yet to comprehend. Simultaneously, I realized that I had come full circle in the past year, and I was back at that Mcdonald’s with that desperate mom. I could see her in a new light. She was no longer eating her salad. She was searching for a diaper, stressed out by her husband; she was alone. But she was tough as nails. When it came down to it, she owned her life and her circumstances. When she told me, “He has autism,” it might have been the first time that she didn’t stumble over the words. But I could never tell. Just like the homeless man who helped us probably could not tell that it was the first time that I had fully owned the statement. In this moment, I knew why this fellow mother was stuck in my head and her words echoed in my thoughts at night for the past year. I was her. And at one point, she was me. And maybe I offered her the same kindness that day that this homeless man had just offered me. Maybe good karma is that simple. And as I said the three simple words aloud, “He is autistic,” one million thoughts of gratitude and understanding darted through my tired brain before they were instantly silenced by the man’s reply. “I know,” he said. “I have a family like yours.” His words evoked within me one final realization. This man was not only my angel; he was my kindred. On a different day, would I have passed him by? I may not have had any money to offer him, but would I have said hello, and how are you? I don’t know. There are still many unanswered questions that are inherent to this journey. But I will not pass him, or anyone by again without so much as an acknowledgment; an ounce of humanity. And I will continue to look up, sometimes with a little attitude, and sometimes with faith and surrender. As I have said, I am not really religious, or maybe I am, and I just don’t know it yet.