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.

The Great Regression

I knew this wasn’t going to be easy. The goal was to take it day by day. It was not supposed to be this long. This was not supposed to be the new normal.

March was just supposed to bring with it an extended Spring Break and then back to school he would go. The year would continue. Progress would continue. The pit in my stomach would continue to dissipate a little more each day because Nico would thrive a bit more each day.

It is now May and my sweet boy is missing out on so much. He has been isolated from the real world for far too long. For him, being home reading his books (over and over again) is completely normal for him, but that was something that school had really changed up for him and I had welcomed such a healthy change of pace. So much of the Kindergartner that I was seeing in him on the daily is disappearing and what is presenting itself now is eerily too familiar.

Nico is regressing.

I can see it every time I try to play with one of his things. His ability to share has started to wane because he has no one to share with anymore. No peers to interact with daily. No one to hold him accountable and show him how to share other than his parents and it’s just different when it comes from us. School was doing wonders for him in this department. He’s not as focused on what I’m saying or asking him anymore. He responds with a “yes” to basically every question I ask whether it be about reading, math, or writing and before I even finish asking it. He is getting easily frustrated when he makes a mistake or answers something wrong and that is leading to more self-injurious behaviors. Banging his hand on the table in protest is something I am having to combat again. Virtual learning is the furthest from Nico’s comfort zone and it is taking a toll on him…and me.

The meltdowns have become more frequent too. This is extremely jarring for me because it takes me back to our early diagnosis days where we couldn’t go a day without a meltdown. Because he has been without speech therapy, academic instruction, and socialization, his communication is regressing. He is becoming more frustrated again when he can’t find the words to voice why he is upset. This is leading to aggression.

Mother’s Day 2020 left me a bit shaken and scarred…literally. Nico’s meltdown caused him to scratch me pretty badly and that rocked my world. He had not had a meltdown like that in a long time and not only did it last for several minutes, he was aggressive towards me in a way that was completely unrecognizable. My sweet boy is loving and affectionate so I could never truly imagine a world where he would be anything but that. I think that’s why this meltdown affected me so deeply. I went to bed panicked that this quarantine may have sparked a new chapter in Nico’s journey that would cause him to start becoming more aggressive. It’s dramatic to think like that, but there are several children and adults on the severe end of the spectrum and they are physically aggressive to themselves and others daily. My heart breaks for them and their families every time I read one of their stories. That’s the side of Autism which isn’t talked much about in mainstream media, but it’s a serious concern for Autism parents.

Ever since that meltdown I have felt my anxiety levels increase and a sense of hopelessness start to creep in. It has also made me sit and reflect on how I’ve been feeling overall with everything that is going on and I am realizing more and more that I, too, may be regressing. I, honest to God, feel myself losing track of hours and days. I can’t formulate words or thoughts as easily anymore. Baking and cooking have been keeping me sane and working out has been keeping my endorphins somewhat elevated, but any time your child is struggling it affects you 10x harder so, needless to say, the anxiety has felt Herculean. I’m feeling myself losing hope. I know it’s probably because I’m antsy and tired of being cooped up. I’m stressed out because of the current situation, but nevertheless I’m feeling like optimism is slipping away.

I’m seeing so clearly now that Nico continues to have major deficits and it’s scaring the hell out of me. He can’t write anything other than his name. He can read so well—truly can read anything—but when I ask him simple comprehension questions he cannot communicate those answers to me. He can’t sit still for more than two minutes. He’s scripting and stimming nonstop while I try to get him to focus on his schoolwork so I know he is not fully aware of what I am trying to teach him. And, at the end of the day, Nico is not talking to me. We can’t even talk about how he’s feeling being out of school and away from his friends because he simply cannot verbalize his feelings and it breaks my heart. I know my sweet boy misses school but we can’t talk about it because Nico doesn’t communicate functionally and I have no idea if he ever will.

What I’ve learned is that Nico and I aren’t living in a cooperative world. We’re living in parallel worlds, looking through glass at each other. Nico opens a window into his world every now and then and lets me in, but it’s not everyday and it’s not for too long.

I have worked so hard these last five years to fill every inch of myself up with hope and push myself to believe that Nico will be just fine. My husband and I have sacrificed so much and will continue to give (up) everything we can to ensure Nico has the best quality of life, but what if that’s still not enough?

I cringe whenever I allow myself to even utter that question aloud.

Darn you, COVID! We have come too far to fall backwards. I’m too tired. Nico should not have to work twice as hard just to get back to square one. I can’t have the same conversations with his therapists and teachers again about behaviors and goals that he had mastered, but now has to remaster because he has regressed. And I can’t even think about what this “new normal” is going to do to our school system, but, if the CDC has anything to do with it, it will be a nightmare. I understand the rationale for all of these precautionary measures; however, after I read their guidelines for reopening schools in the next school year I almost stroked out. No child should be subjected to an environment like that, but kids like Nico will struggle in all new ways and I cant fathom my son suffering through that regardless of how resilient he is.

I’ve been talking to my other Autism moms and I know I’m not alone. We’re all feeling so defeated right now. And I know that these feelings aren’t just reserved for special needs parents. This pandemic is taking a major toll on all of us parents and our kiddos.

This is hard. There’s no handbook for something like this. I just have to reserve the right to feel sad and grieve. So, today I am going to grieve the childhood my son deserved and is missing out on…and that has everything to do with the pandemic, not Autism.

Ironically, Autism has done a tremendous job of preparing us for social distancing. At the beginning of our journey with Autism, we spent plenty of time at home not wanting to be social for fear of what it might trigger in Nico. So, in this respect, Autism has managed to come through for me and produce a social distancing silver lining amongst all of this regression. It truly does bring about so many unexpected surprises.

Let’s hope better days and good things are coming…