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!

Freeze Frame

I wish I could freeze time. Right now. Just freeze it as it stands—regardless of all the chaos that is enveloping our world at the moment—because Nico is having an amazing summer.

I don’t think I have ever felt this at ease with my son in the five and a half years since his diagnosis. I had to actually stop and think back to the last time Nico had a real meltdown or bad day because I couldn’t understand why I was feeling so content lately. Normally I am so silently on-edge, waiting for something to happen. But, he has been so regulated and happy these last several weeks that I, for the first time since his diagnosis, haven’t been hyper-focused on his Autism.

No joke. No exaggeration. I have not looked at my son and thought about Autism. I have not felt anxious, overwhelmed, or hopeless in what feels like ages and it’s because Nico seems so content with life. It’s not as if he has completely stopped stimming or scripting. He hasn’t changed up his interests or diet or sensory needs in any extraordinary way; yet, I have been utterly transfixed on his lighthearted disposition.

Now, it could be 100% attributed to the fact that he has spent a majority of his summer so far with his cousins and he feels so comfortable with them. He can be himself with them. They just get him. Nico doesn’t have to say anything or do anything extra for his cousins to know what he needs or wants. They know when he needs a break. They know when he needs affection. They know when he wants something simply because they have learned to pick up on his verbal cues and nonverbal behaviors.

With a pandemic in full effect, typical summer vacation plans were squashed, but that didn’t stop Nico and his cousins from enjoying a family-imposed “Stay at home” order. They swam all day, watched movies, snacked until their tummies were busting at the seams, stayed up way too late for their own good, laughed until their insides hurt, and made these quarantined times as fun-filled for each other as possible.

And with Nico spending so much time with his family, he is using more language again. He is socializing more. He wants to be around us more. My heart is bursting because my son is engaged and present in ways that I haven’t seen for awhile. This is what we had been missing ever since schools switched to remote learning and kids weren’t in school socializing anymore.

However, if there is one moment from this summer so far that I could freeze and replay over and over again it would be the moment Nico gave genuine attention to his baby brother, Max. Normally, it’s like pulling teeth to get Nico to even acknowledge that Max exists. He knows his brother is here to stay, but he just lets Max do his thing while he does his. But, the other evening, I was rocking Max to sleep in my arms and we were both nodding off when I felt the most subtle brush past my arm. I opened my eyes and there was Nico rubbing Max’s head ever so gently. Just enough to let him know, “I see you. I love you. You mean something to me.” But, not with too much pressure that would have woken either of us up.

He sat there and rubbed Max’s head for a good minute or so and I kept ever so still with my eyes slightly ajar, watching my sweet boy give his brother love and attention…on his own terms. On his own time. I didn’t open my eyes or let him know that I saw him. I wanted Nico to have that moment for himself. That’s what he wanted. A private moment between brothers. Instead, I choked back my tears, took a mental photograph of the moment, and noted the date and time for memory’s sake.

My sweet boy continues to surprise me each and every day. There is still so much of him I have yet to discover, so when he is present in the moment with me or welcoming me into his world I have to recognize it on a grander scale.

Now, I don’t know what the remainder of summer will have in store for us when we have to say goodbye to our family. I know it will crush us, especially Nico. And, I am scared beyond words at the thought of the upcoming school year and what option is the best for him. I know the socialization and daily routine are absolutely paramount for Nico’s continual progress and growth, but not at the cost of our family’s health.

In a year with so many atrocities and so much despair, I want to carve out this one fragment of time and just hang on to it for dear life. Who knows if these moments will ever be replicated again. Autism can shift and change at any time and take Nico in a completely different direction.

But, what I do know is that Nico is happy. Nico is having fun. Nico is surrounded by his family who seem to magically evoke this incredible transformation which frees him of challenges and limitations.

So, for now, I plan on giving Nico a summer filled with as much socially distanced, quality, quarantined family fun time as possible.

Let’s just hope that this blog post will not trigger a tsunami of superstitious jinxing (which really means Nico decides to basically say, “just joking, mom…here’s an epic meltdown for ya!”) at its conclusion. Fingers crossed!

Stay safe and healthy, but remember to live, love, and laugh everyday. We’re all in this together.

A Mother’s Love

I don’t think there is any stronger love than that of a mother’s. There is not anything I wouldn’t do for Nico to make his life easier, less of a struggle, more fulfilled, or more neurotypical. I have made ultimate sacrifices for him that have truly tested my faith, patience, and resolve, but I literally could not imagine NOT working this hard for my child.

This pandemic has been catastrophic on many levels and it has affected our little family in many ways, especially Nico. The only silver linings I have clung to have been the fact that he has his ABA therapy everyday and our backyard haven. We follow strict guidelines so that we know both Nico’s therapist and Nico are healthy each day they work together. Without ABA right now, I don’t know where we would be. And, when Nico comes home he enjoys his pool, swing, and trampoline in the backyard since going out or traveling is out of the question. That has been our life for months now and because of this dramatic change in daily life, Nico has regressed. I know he will have to relearn so much. It keeps me up at night just thinking about. I walk around my house with knots in my stomach just thinking about it.

As a mother, my life is my children. I have two now so I have to spend it equally between both of them, but that can be tough when one has special needs. I just always feel myself being pulled a little bit more towards Nico. Being a bit more protective of Nico. Wanting to give Nico a smidge more attention otherwise he would really never interact with his father, brother and me. Nico would be perfectly content to sit in the living room with us, but live in his own world surrounded by his books, his iPad, and his little knickknacks he finds around the house and collects in a pile. I catch myself staring at him, just wondering what he’s thinking. Wondering if he even knows or cares that his mother is literally watching him from just a few feet away with such wonderment and concern. I wish so many things for him. Every chance I get, I am trying to get him to talk appropriately or engage with us in functional ways. I live for the moments when he wants to be tickled or wants to show us his dance moves. It shows me that he can connect to us when he wants to.

Nico has no idea how much I truly love him. It’s an all-consuming feeling. I cannot find enough words to even describe the feeling. I tell him every single day, multiple times a day, that I love him. He very rarely registers what I’m saying, but I have to believe he knows what those words mean and he knows that he is loved. I now fully understand what my mom meant when she said those same words to me over 20 years ago. “You have no idea how much I love you…truly you don’t and I will never be able to explain it to you.” I found it so overly dramatic at the time, but I allowed her to hug me and gush over me because we were setting up our home for my high school graduation party and she was feeling very sentimental. I gave her a big kiss, told her I loved her to pieces, and then took off before she got weepy because I knew it was headed in that direction and I was a teenager just wanting to finish my chores. I knew she loved me, but as I reflect back…I really had no idea how much she loved me.

I am beyond thankful though that we had that moment together and she spoke those words to me because it would be our last mother/daughter moment. I would not have her with me after that day and I discovered there truly is no substitute for that kind of love—a mother’s love.

It’s a love that makes you wake up at 7am every weekend to make your children their favorite pancakes.

It’s a love that makes you take out every seed from a watermelon because you know your kids struggle with the seeds.

It’s a love that has you making your own secret blend of cinnamon sugar for your child’s favorite food in the world—cinnamon toast—because it makes him deliriously happy.

It’s a love that makes you stay up until 2am on the weekends to play all the Super Mario Bros. games because it is the best time to spend quality time with your one child while the other is sound asleep.

It’s a love that makes you want to sing to your child each morning and evening because his eyes radiate and it puts a smile on his face to hear music.

It’s a love that makes you leave everyone and everything you have ever known and move to a whole new state so your child can have a better quality of life despite your fears and reservations.

And, it’s a love that will continue to break you down, build you back up, carry you through, knock you over, and make you whole again because it’s a love reserved for your children.

My sons have no clue how much I absolutely love and adore them, despite how much I smother them with kisses and hugs and “I love you.” Just like I had no clue how much my mother truly loved and adored me in those childhood moments. But, I am so grateful to her because she taught me what a mother’s love should look like and feel like and what it endures and sacrifices.

So June 27th will always be my day to go an extra mile in showing my sons what a mother’s love feels like because there is nothing else like it. And for my Nico, I will continue to try and move mountains for you because you deserve nothing less.