Being Seen

Today autism won. Today it got the best of my Nico and me. I learned today that even though Nico has grown in so many ways, he is beginning to struggle with new issues that will bring about all new coping mechanisms for both him and my husband and me. Today I felt like I never wanted to take Nico out in public again and I haven’t felt that way in a very long time.

The signs were there since the morning so we probably should’ve known, but we have our family in town and we wanted to enjoy an evening out with them. Thank God for our family though. They are patient, understanding, empathetic, and always willing to stand right alongside my husband and me as we try our hardest to manage Nico when he is having a hard day. It can be taxing and I know it’s not fun to be around, but it brings me comfort knowing they’re there with us. I feel less alone and it helps keep my anxiety that starts creeping back in at bay.

I probably should’ve stayed home with Nico and let the rest of the family go to dinner, but I thought we could manage. The whining started as we were walking out. Why didn’t I take him back in and just say forget it? Then we get there and the muffled, repetitive “time to go home” responses kick in and I should’ve just headed to the car with him. But, the kicker was when he spilled his snack all over the floor and knew he couldn’t eat them after that.

It was all downhill from there. The crying started. The bellowing followed. The angry grunts began. And, he started banging the table in utter frustration. No amount of “calm down” or “stop it, Nico” from my husband would suffice. Even after my husband feverishly picked every last one of the dropped snacks off the ground and got them out of Nico’s sight, he still could not appease our poor, struggling child. And to make matters even worse (because, why not?), Nico stood up and started screaming so I had to grab him (while seated in a huge open and public outdoor eating area, mind you) to try and get him quiet and calm. I was hoping that if I squeezed him tightly it would provide him the input he was in desperate need of at that moment.

I could feel my throat start to tighten and the tears forming in the corners of my eyes. Not to mention all the stares from onlookers that felt suffocatingly too close for comfort. I was literally going to tell my husband to give me the car keys when I looked up and saw it.

The most endearing and sincere, smiling face.

Amidst the stares and curious glances, this one woman just looked at me, gave me the most compassionate smile and winked. It happened within seconds and yet those simple gestures brought me such peace.

I work so hard to stay patient. To keep my cool with Nico even though it’s a very difficult thing to do when you are tired and have a demanding toddler to manage as well, but I try my hardest to stay calm for Nico’s sake. I know he can’t help it in most instances like today. He was over sensitized, probably tired, mad that he dropped his snack, and struggling because his need for perfection tells him that he shouldn’t have done that so I was really reconciling with all of that in order to not lose my patience or burst out crying (which is really what I wanted to do). It’s what my Mom would refer to as “grace under pressure.” This ability to hold it together when inside you’re feeling like you’re falling apart. I learned this such grace from her and let me tell ya…it’s an art.

That was what was happening to me in that moment as I held Nico close to my chest, squeezing him so he would calm down while also providing him some input to help regulate his out of control behavior. And if it wasn’t for that kind woman’s simple gestures I may have not been able to keep my grace today.

I wish I could’ve said thank you to her. It felt so good to be seen. I’d always hoped that when I flashed a smile or supportive glance at a parent, struggling with a child, that it provided some sense of comfort, but now having experienced it myself I have to believe it did. I wonder if this woman had a special needs child and knew exactly what we were going through in those moments. Or, maybe she was just a parent who knew what it was like to have an off-day with a child. Either way, that smile and wink saved me mentally.

I wish I could say her gestures were magical and changed the whole dynamic of our evening, but alas, Nico still struggled throughout the rest of our dinner and didn’t make the evening a pleasant one. However, I just kept seeing that smile and wink flash in front of me and I was able to stay composed through the rest of our time at the restaurant.

Today made me really think long and hard again about what Nico’s future might have in store for us. If we’re now moving into a stage of obsessive compulsive behaviors and the need for constant control of everything and everyone, what will these next years usher in for him? Will I be able to keep my grace under pressure forever? Will our family stay patient and empathetic? Will he have any friends? Will we ever go out as a family and be able to enjoy ourselves?

I honestly don’t know. If you asked me for answers to these questions right now, the answer would probably be a resounding NO. But, after experiencing such divine intervention (in more ways than one, I’m sure) I have to believe that there will be more…

smiles in the grocery store

winks at a restaurant

compassion from the barber

miracles worked each day by his therapists

empathy and acceptance from his classmates

willingness to come to our home so Nico can stay home where he’s most comfortable

and embraces from family and friends when they are needed the absolute most to get me through the next meltdown, breakdown, struggle, etc.

I have to remember that tomorrow is a brand new day and it quite literally could be a terrific day for Nico. That’s typically how it works in our little world. However, I also know it could be a tough day for another parent out there in the universe and I want to always feel ready to share a wink and a smile with someone in need just as I was gifted with those lovely tokens of empathy today.

I used to be so scared to go out with Nico for fear of the stares we would get from others and although today brought me back to that place of fear and anxiety momentarily, I didn’t mind being seen today because it was through being seen that I received the most peace when struggling with my son’s autism. Life’s funny that way, I guess.

One Year Can Make A World of Difference

Today was Nico’s last day of school. He is officially a 2nd grader and we can finally close the door on this challenging, yet thriving school year. It seems surreal to think that Nico literally spent a whole academic year in a virtual learning environment and there were times where I didn’t think any of us were going to survive it, but here we are.

I get to sleep in a little longer tomorrow. Hallelujah!

Now, I know Nico did not learn nearly as much as he needed to because of this virtual landscape and I know he will head into 2nd grade a bit behind. But, today, as I heard Nico shout “I love you” to his classmates over Zoom who were all saying goodbye to him—classmates who have only met my son through a computer screen—I realized that Nico felt so accepted and included in his class that he knew to connect those feelings with love.

Nico always has a way of opening my eyes to things that I would have otherwise missed if I allowed myself to constantly worry about all of his struggles and the experiences he is missing out on. It’s not that I am pessimistic when it comes to Nico; I’m quite the optimist, but I feel that as an Autism mom my natural inclination is to want to eliminate as much struggle from my child’s life as possible. It’s a visceral feeling that can become all-consuming if I let it. And, in doing that, I sometimes overestimate how much of a struggle things really will be for my son.

Autism is just so unpredictable. One minute Nico can be flying high and life can be so smooth and then BAM! out of nowhere a meltdown rushes in and knocks the wind out of all of us and I am right back at the beginning of this journey with Nico, fearing the very worst and not wanting to expose him to anything or anyone else.

We did see a lot more meltdowns this school year, as I predicted we would, because of quarantine, virtual learning, and a lack social interaction, but as I watched Nico sleep this evening I thought about all he achieved and the ripple effect he had on me and so many others.

Here is my Top Ten List in honor of my Nico:

1. Nico learned the Pledge of Allegiance within a few days and recited it perfectly each morning with his class, remotely of course, with such prosody and cadence.

2. Nico can independently write every letter of the alphabet with control and more precision than I have ever seen from him before.

3. Nico was a top reader in his class and answered questions when he was called on by his teacher even though he never stepped foot in her classroom. All of his interactions were via Zoom and yet he sat and participated which was not easy for him to do day in and day out.

4. Nico began to demonstrate feelings of embarrassment and the desire for privacy. This was huge for me because it indicated to me that my son was growing up. He’s not a “baby” anymore.

5. Nico conquered his fear of using the bathroom to take care of all of his business. This one right here was a show-stopper because I really felt it may never come, but it came as a result, I believe, of #4 above. I don’t think he could bare the idea of his parents having to manage his bathroom needs like we do for his baby brother. This one also taught me that Nico truly does everything on his own time. I need to just trust in him to know when it’s time.

6. Nico started interacting and communicating more regularly with his little brother, Max and, in turn, learned how to more effectively communicate what he does not like. I think Nico picked up this new level of communication pretty quickly since his little brother definitely doesn’t know boundaries and could care less that “No, Max, no!” actually means NO! Stop! I’m done playing with you! Cracks me up just thinking about it.

7. Nico made friends with his classmates without ever meeting them in person or stepping foot into the classroom. Somehow these children just knew Nico was someone they wanted to know and be friends with and it made his year…and mine. They would cheer him on and ask where he was when he wasn’t on Zoom, which just melts my heart. I want to thank their teacher for building a culture of acceptance, hug each and every one of them and their parents.

8. Nico encouraged me (and he probably doesn’t even realize it) to make a huge change in my career so that I could continue to be present for his daily milestones, but also show him that his mom will continue to do whatever she needs to in order to give him the best quality of life.

9. Nico grew his skill sets in all of the areas that interest him the most: technology, swimming, dance, reading, and theater (mostly crying on-demand, but he is darn good). I know this child is meant to do great things in this world and I have to nurture these skill sets moving forward so that he can feel comfortable exploring them as he gets older without anxiety and restraint.

10. And, lastly, my sweet boy grew up on me. I don’t know when it happened, but I looked at him this week and I didn’t see a small child anymore. I see a grown boy who is thriving and maturing. Just thinking about it makes me choke up. He’s come so far.

I think sometimes I forget that because he doesn’t always talk to me like a typical 8 year old or interact with me like a typical 8 year old that he is stuck at an age where I need to take constant care of him. This may be true for all parents of their “babies,” but today when I looked at Nico I saw him through new eyes.

He is my sweet, endearing, funny, pensive, acutely aware first born child and he is one year smarter, stronger, cuter, braver, kinder, taller, and…

closer to the point where hopefully he’ll be able to share with me, in his own words, what a difference a year made in his life…through his eyes.

I truly can’t believe what a difference one year makes though. It can feel so sublime and significant and, yet, simultaneously represent just a notch on the timeline of your life. Some years will be stellar and some will just be survived. This year ended up being a mix of both. I’m just so relieved I/he made it through.

So to my cool, new 2nd grader…

You did it, Nico! Your dad and I are so proud of you. We love you beyond measure.

Ripple Effect

I woke up today and Nico was staring at me. I’m not sure how long he had been laying there waiting for me to open my eyes, but as soon as our eyes were locked in on each other he said, “Good morning, Mom! Time to get up and face the day!” I swear to you I almost burst into tears, but held it together and just squeezed him tightly and praised him for using his words and starting my morning off on such a high note. The fact that those words came so naturally meant two things: 1. he’s getting better with his verbal communication and 2. he likes when I wake him up with that same exact greeting which is where he got it from…me.

I have really been pinching myself lately because every time I turn around Nico is saying something new and it’s being communicated so naturally. He told me the other day, “I want you to read me this book and then I want goldfish, please.” I swear, I thought I hallucinated. I could not believe my son, the one who I have prayed for daily and feared might never use full sentences, spoke to me like a typical child and without any prompting or coaching from me. He literally just came up to me on the couch with his book and spoke to me like he had been doing this sort of thing all along.

That time I did cry and I grabbed him and hugged him for what felt like, for him at least, an awkwardly long time, but I just could not let that moment pass without letting him know how proud I was of him. However, because Nico is such a literal person he did not like that I cried. It made him anxious, thinking something was wrong with me or that maybe he did something wrong and my Nico is a pleaser so I had to quickly get a grip and lighten the mood otherwise this milestone could’ve turned into a meltdown.

Nico is very in tune with others’ emotions and feelings and wants to make sure that everything is copacetic at all times. It’s one of the many areas of growth I have seen in him, especially since Max has come into our lives and since the pandemic turned his/my world upside down. He sees me on a daily basis manage his little brother, Max’s little tantrums which are totally typical of a thriving toddler, but for Nico it does not seem typical. He doesn’t like to see or hear Max get worked up so he will normally either start competing in raising his volume when Max gets loud (which is so not pleasant and helpful in any way) or he will try to calm Max down by repeating the same phrase over and over, “it’s ok, it’s ok.” Neither have had a high success rate at all so I’m sure he is thrilled when I put on a little episode of Cocomelon—yep, there is no shame in my game—on my phone and distract him with it so I can finish changing his diaper.

So, it came as no surprise, but I was, again, utterly amazed when I learned that while out for date night with my husband Nico came to his grandpa’s rescue. Max was starting to give his grandpa a bit of a hard time and wouldn’t stop fussing and crying. Nico could obviously see that his grandpa was struggling to get Max content so he grabbed his iPad, found a Cocomelon episode and put it on the couch. As soon as Max heard the theme song he immediately stopped crying and it drew his attention to the iPad. Nico didn’t say a word. He just went back to reading his books and doing his own thing.

Nico, being the amazing problem-solver that he is and always observing what is happening around him, knew exactly how to get Max to settle down because he had seen his parents do the same thing before. When my father told me this, I looked over at Nico and praised him for his valiant efforts. He didn’t say a word, but the smile and the quick flapping of his hands let me know he understood that I was proud of him.

This school year has been hard for Nico. I know he is behind academically and will need a lot of work to get caught up come next year. It keeps me up at night just thinking about all the intervention he will continue to need on top of therapy, but then I think to moments like these where he is showing such growth, understanding, and maturity and I feel a bit less anxious.

He’s using more complete sentences daily like, “I want to go to sleep” or “I would like you to sit on the couch, please” and no one is prompting him to say any of it. He’s interacting with Max more and more everyday and he watches how we handle him which I know is helping him better understand how to manage Max too.

It is absolutely true that children learn from what they see and hear. That intrigues me, but also concerns me because with Nico I know he observes and internalizes everything around him. And because he is such a literal child, he doesn’t pick up on sarcasm or the nuances of a situation and that, in turn, can have a ripple effect. Learned behaviors are like ripple effects.

I’ve become more and more aware that Nico has been learning from what he sees and hears for awhile now even if it’s only now just starting to materialize into something WE can see and hear. He has felt my stress and anxiety from all that we experienced in these last 9 months with our house flood just like he feels my joy and elation when I wake him up in the morning and give him a big morning kiss.

I want to know that at the end of the day if this year was a crapshoot academically for him that at least he has learned some other amazing life and social skills from being home with his family. I want to know that each day is filled with teachable moments for him that will create a positive ripple effect in his life just like the ones I’ve seen as of late.

Nico is brilliant in so many facets of his life and I need to believe that all of these moments and experiences he is having, both positive and challenging, are going to help inform his life on several levels—socially, emotionally, and academically. As Nico has grown I have become less fearful of autism and more fascinated by its ambiguity. And although it still seems to carry this polarizing perception, I am feeling more and more compelled to focus on all the wondrous aspects of my Nico’s autistic brain.

At the height of the pandemic last year, I was having such a difficult time seeing Nico regress so I started clambering for anything I could find online that was providing support for autism parents living through the pandemic. I came across an article that truly turned my abysmal outlook on Nico’s autism on its head. I keep this article with its list of positive traits in my phone, my purse, on my computer, and I think I may even print it out and place it on my fridge to continue to remind myself that Nico is a terrific, awe-inspiring kiddo and as his mother, I have an immense responsibility in shaping who he will become. I want his ripple effect to be one that positively impacts the lives of everyone he touches. Thankfully, Nico has a little brother who will allow him to shine as the child who follows the rules and fulfills expectations since Max is busy creating his own ripple effect in our home which is filled with destruction and exhaustion.