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.

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.

Music Can Move Mountains

2020 has truly thrown me some curve balls and the year isn’t even over yet. I feel like once the summer came the days blurred together and I haven’t been able to catch my breath or tell one day from the next. I’m sure I’m not alone. This year seems like it will go down in infamy as the most treacherous year for all people, places, things, and animals…yep, basically every noun you can think of.

And speaking of nouns, I can’t believe we are into our fourth week of Nico’s school year and we’re all still in one piece. Nico is now a first grader and is also a 100% remote learner due to this God-awful pandemic we are living through. This is not the ideal setting for him and all summer long I was a ball of nerves thinking about how hard this was going to be for him and me. He hates talking to anyone on FaceTime so I couldn’t even imagine how he would manage working with his teachers on the daily through a computer screen. The only thing he looks forward to and understands clearly is the “Leave Meeting” button so you can see what a joy it is to work through five live Zoom lessons with him a day when he is just not into interacting with others virtually.

And if that wasn’t enough to keep me up at night, our first floor flooded, due to a water pipe bursting in our home, when we were hundreds of miles away visiting family so we ushered in Nico’s first day of the virtual school year from a hotel room and have since moved into a temporary home while ours begins the looooooong process of being rebuilt. Needless to say, Nico has been less than pleased with all of these changes and who can blame him? I’m barely hanging on myself.

I don’t think either of us has been in the best of moods for weeks. I can always tell with Nico because he gets over-emotional and weepy at the drop of a hat and will cry off and on all day. Or, he can get really frustrated and just want to throw things or become a bit aggressive with me. I feel like even I have been a roller coaster of emotions as I come to terms with being displaced from my home for several months in the middle of a pandemic during an unprecedented school year with a special needs child and 10 month old who would literally crawl back inside me if I let him.

I have been working tirelessly to stay optimistic and upbeat, but it has been extremely trying for me and I know Nico can sense my dismay and distress. Individuals with Autism are actually quite empathetic and feel emotions very deeply and Nico always knows when I am struggling or stressed or sad. And because he has picked up on my stress and discontent, I have noticed that he is struggling more.

Now, music has always been an incredible outlet for me to relieve my stress. I would often play my favorite songs on repeat growing up to help me regain my composure or release my stress and anxiety. Singing is also a favorite pastime of mine so, whenever I can, I will sing to help elevate my mood. Nico has always enjoyed music as well. From a very young age, he came alive with music. He loved when I would sing to him; it would actually help regulate him when he was getting over-stimulated so I would try and incorporate song into many of our daily activities.

As he has grown, he has become more selective with the music that keeps his attention and lightens his mood. He won’t let me sing the same songs I would sing to him when he was small anymore so I have to constantly find new ones to introduce him to. And, he has quite the eclectic musical palette too, which is kind of cool because he chooses music based on movies he loves or songs he hears that make him want to dance. He will then request these songs by telling me the name of the movie or by choosing a word or phrase from the song and repeating it over and over until I pick up on what he is saying.

He is quite my little problem-solver. He knows he has limited language so he always chooses his words strategically.

Well, today we started our fourth week of virtual learning and it was a marvelous Monday as we got in the car to head to the center, although I know neither of us was feeling quite marvelous. It’s just so hard to shake off a funk once you’re in it. But, as I drove Nico to his therapy center where he gets both his therapy and support with his virtual school day, I felt we needed something to boost our spirits so I put on the radio.

That’s when something really cool…and maybe even serendipitous happened! My car’s Bluetooth connected to my phone and the first song to play was a track from the movie, The Peanuts Movie which is a fave of Nico’s. And the song could not have had a better message for both Nico and me! It was a song by Meghan Trainor titled, “Good to Be Alive” and it always gets Nico moving and smiling. He must’ve really been needing to hear this song too because he was actually singing along with some of the lyrics. I could hardly contain my excitement when I heard him! My son, who uses very little language unless to request something or if prompted, was singing along to a song!

This was enough to catapult me out of my current funk for sure! But then, as musical fate would have it, my own anthem literally came on next without any prompting from me. Neither of these songs are in a playlist together nor did I intentionally connect my Bluetooth to play this specific song, but now we were listening to a song that I had to believe was sending me a message as well. It’s a song by Jess Glynne titled, “Hold My Hand” and it’s one I listened to nonstop the year it came out. The year was 2015 and it was the same year Nico was diagnosed with Autism. I remember playing this song over and over again and feeling so alone because I needed my Mother more than anything to just be there to “hold my hand.”

Well, here it was again, saving the day and lifting my spirits. I felt like there was almost a little bit of divine intervention happening in the car this morning as the song played, but what made it absolutely outstanding was to look in my rear view mirror and see Nico bopping his head and moving his hands to the beat so succinctly. I couldn’t help, but belt it out for him and then play it again before we got to the center so we could have just a bit more musical magic help bring us back to life.

This year has not been the best for us. It started in March with COVID and slowly inched it’s way to awful with my furlough in April and then became downright abysmal by July with our house flooding so I am just thankful we are standing upright in Week 4 of the school year. And because this year has sucked the life out of me, there were no First Day of School pics taken, no official posts to ring in this school year. I am behind on doctors’ appointments and first day of school haircuts. And, I have little over a month to put something resembling a 1st birthday party together for my precious Maximo while still keeping it COVID-friendly (talk about a contradiction in terms), but I’m giving myself a pass on having it all together this year. After all, my motto this year has been: “Welcome to the Sh$& Show! Compliments of 2020!” But, after having such an uplifting start to the day today, I feel like hopefully things will start looking up for us.

So, today was the START of our NEW school year! It may still be a bumpy one. Nico may struggle and resist, and regression may still occur to some degree, but my sweet boy will always have his music and our car rides to the center where we can “center” ourselves around the music that has become our mantra. Words are so important for both Nico and me. I love to write and Nico loves to read. And the lyrics we listened to today had a message that spoke to both of us, and that is…everything is going to be ok.

We got this!

We have each other and it’s good to be alive!

Truer words have never been spoken. I have Nico’s hand and he has mine and we are so lucky to be healthy and happy and able to wake up to another day together as a family! Here’s to this new school year for my sweet boy!