I had an interesting experience recently. While playing at the park with my "Princess Avery" and her baby brother one sunny afternoon when Nicholas was at school, I noticed a young man, maybe 15 or so, who was wandering across the grassy area near the playground structure. It struck me as odd, only because I thought he should probably be in school during this time, wondered why he wasn't, and for a brief second, a red flag immediately went up because only a few seconds after I glanced at him, he very deliberately paced over to the swings just near where my two children and I were playing together. What happened next, was unexpected, and essentially became a revelation about how autism has changed my life, and my thought processes in general.
The initial "red flag" that immediately had risen when this young man began to approach us was due to the fact that in this day and age, there are so many stories of random crime and violence against children that you simply cannot be too careful or alert as a parent. His deliberate physical approach, and the fact that I thought it odd that he was not in school stirred my immediate reaction of thinking that perhaps this person could be a potential threat to my children. Admittedly, it’s a horrible and judgemental first reaction to any human being, but unfortunately, society has molded my brain to default to this type of thinking in certain situations. However, in less than a split second of having had this thought, I immediately calmed and had a thought that never would have occurred to me 5 years ago…or even 2 years ago. As I glanced over at him during his approach, and then observed his very focused intent to zero in and land himself in the swing next to us, I very quickly shifted mental gears and though to myself, “I bet this kid is on the spectrum.” It’s probably not the most common next logical thought that the average person would have, but right then, I realized that autism has changed the way I see things. The man sitting on the street corner talking to himself, the person at the train station yelling at no one, or the anti-social guy in the grocery store line who seems rude but is very quiet, I tend to give the benefit of the doubt nowadays rather than thinking they are some mentally deranged person. And I say it this way, because this might have been the way I would have internally judged them before. I'm not proud of that, but it is what it is. Live and learn. Maybe they aren't on the spectrum per say, but there is just as much a chance that some of these people have legitimate, diagnostic issues vs. just being strung out on drugs as I once might have assumed. Anyway, having said that, I shifted very quickly from “momma bear” mode over my children, to “momma bear” mode over this young man because I could tell by the way he was swinging so fast and so high and enjoying the experience SO immensely, that I just knew that I had to be right about him. So, I began observing him a bit. For me, It’s not an every day occurrence to meet an older child with Autism, and as a parent of a toddler with Autism, I often wonder if I could learn anything about what our family's future with Autism might look like in talking to older Autistic adults, or their families, and hearing their stories from along the way, and from their present day. And now, here it was! The the opportunity was staring me right in the face!!
As I observed him for a few moments, he began to chant something over and over. I couldn't make it out, but whatever it was made him smile. And then it made me smile. I could tell that he did not want to make eye contact with me, but he did appear to try, so I said hello to him, knowing that he probably would not respond in a "socially appropriate" way, if he responded at all. But I wanted to make sure that he knew that he was in good company, not alone at the park, and that he had been "noticed" in a positive way. He, as predicted, didn't respond, and I continued to push Avery on the swings until she wanted to go and play somewhere else. As she ran across the playground, this young man began to laugh out loud at her. Something about her cute, klutzy toddler gait was funny to him, and again, I smiled thinking of Nicholas and some of the random things that make him laugh. (Behr paint commercials, certain scenes from Toy Story, The Strawberry Shake song.....) I said something else to him at that point (of which I don't recall) but basically to acknowledge that I had heard his laughter
As I finally walked away to follow Avery, it occurred to me that he was alone. Where was his parent? Did he walk here from somewhere? Is someone looking for him?
A bit later, Avery and I returned to the swings, where he still remained, happily swinging away. I attempted to interact and acknowledge him a couple of times, and then eventually, I heard a voice yell to him "Daniel (a false name to protect the innocent, of course!), that is too high. You need to slow down a bit!" This woman had been sitting on a bench in the distance all the while and I had not seen her. I decided, after a few more moments passed, to approach her. By this time, Avery had made a little friend, (which as a side note, was so awesome for me to witness, because peer interaction is not something I take for granted, and she is REALLY beginning to blossom in this area. So cute and cool to see as a parent!) and Brody was following them both around like a little puppy. I figured I had a fighting chance to have a real conversation with another adult...so, I sat down next to her, and said hello. I told her that I hoped that she didn't mind my asking, but was her son on the spectrum? To this, she gave me an odd expression, not because I asked about his diagnosis, but because he was, in fact, not her son. She was his caregiver, and had been working with him and his family on a daily basis for about 4 years now. As we began getting more involved in conversation, she began sharing with me that his family situation, a sad one of which I will suffice to say involved a broken home, and estranged siblings, and essentially, this is how she came to be part of the family. She stays with him during the day, helps him with whatever he needs, gets him to and from school, therapies, appointments, etc while his father works. Then, of course, as "Clueless Warrior Mom with Autistic Toddler," I wanted to know all about him. What are his "symptoms?" When did he learn to talk? How "functional" is he now? Will he be able to live on his own some day from what they can tell now?? In my mind, this woman held some sort of crystal ball that could be my future...Nicholas' future....my family's future. I was curious about his daily routine, his school life, his social life, when he started speaking, what medications and doctors had they seen, and, well, just about any nugget of insight or information that she could provide that would prepare me for the path we are treading.
Most of these questions, I never even got to ask. In fact, here is what I took away from our short but thought provoking exchange....he is more accurate than a Garmin GPS when it comes to directions. She said it is impossible to get lost when she is with him. He requires and follows an extremely detailed and regimented daily schedule, which is written out for him at the beginning of each and every week. She posts it for him at home, all seven days, every activity of every day (Wake up, Brush Teeth, Eat Breakfast, Go to school...etc. etc.) and after reading it only one time, he will have it memorized. She told me that they used to post the entire month for him, but it became too overwhelming because he would memorize and recite the entire 28, 30, or 31 days of said month, which, as you can imagine, could take up a pretty large chunk of one's time that could potentially be put to better use. As a matter of fact, he stopped by the table at one point while we were having our discussion, and I had the distinct pleasure of hearing him do just that. From beginning to end, he rattled off every move he would make, every place he would go, was extremely diligent about getting it right, correcting himself if he made a mistake, or adding an extra detail or two from time to time when he deemed it necessary (for example, the calendar said dinner at Nana's house on Sunday, and I was informed later that he added in the "and Uncle Jim" because uncle Jim recently moved in, and his name SHOULD have been on the calendar entry for this activity but was not.)
This was so fascinating to me. Let's face it, I can barely remember what I have already done the day before, let alone sketching a months worth of appointments and activities into my brain in advance. I could tell how so very proud of himself he was for having given a flawless recitation of his schedule, and I really fell in love with this kid at that moment. But something else happened in that moment....back to my revelation I mentioned about 500 words ago.... Having met him, and spoken with this woman, while still interesting and a memorable experience for me, does not give me any more insight into my future than just asking a random person on the street. I occurred to me that what she had told me about him, and what my experience with Daniel had been, was just that.....about Daniel. It was not Nicholas. I was not, at all, looking at my "son's future." I was simply looking at Daniel's "now."
I don't know if it's the same for other autism (or any special needs) parents of young children, but for me, there is this constant and underlying obsession to find out how this will all "pan out" when he gets older. Will he speak? Will he go to college? Will he live on his own? Will his potential be realized? Will he be happy as an adult? Am I doing enough to make sure that it is? And as much as meeting other parents of older autistic children/young adults may still be valuable to me in terms of simply knowing their experiences and what has worked or not for them, my child is my child.
All of my children are unique in their own ways, autism or not, and I can't expect to know the future for ANY of them. How silly and blind of me to think otherwise. How limiting of me to try and make such a narrow-minded comparison of my son's future based on someone elses present. The world is our oyster, and we've only just begun down this path. So much can and will change in this world over the span of our lives, and it is simply not productive to even think about the future in that capacity right now. That's not to say that I won't from time to time....it is inevitable and I'm only human. But I will try to spend less time doing this because this experience reminded me that no matter what your circumstance, you just have to take life as it comes. There are no guarantees, good, bad or indifferent for anyone in my life, and the sooner I stop trying to find some kind of crystal ball into our future, the closer to acceptance of autism joining our family I will be. I'm still not there, and I still wish Autism would not have knocked on my family's door, but it did, and I was just remided that I need to embrace it instead of trying to figure it out, or minimize it.
If you are an autism parent reading this, or really anyone struggling with any situation like this, maybe you have already learned this lesson, but I have only just arrived here in this moment. And the more experiences I have mirroring the one I had with this woman and Daniel, the closer I hope to get to finding my peace with this. I hope you find or have found yours too. I suppose life would be less exciting if we already knew what was going to happen, so I'm just going to try my best to stay away from crystal balls, and let the dice fall as they may.
