When Family Shows Up

This last month has been filled with some really amazing highs and some incredible lows. Such is life, I suppose, but when you’re trying to wade through the tumultuousness of a nationwide pandemic–while raising a child with Autism in the midst of it–the highs just don’t ring as high and the lows leave a more somber, stifling effect. That’s when it’s so absolutely invaluable when family shows up.

I knew celebrating Max’s 1st birthday was not going to be as grand as I always envisioned it to be thanks to COVID, but I was still going to find a way to create memories with him to help document this milestone birthday. I was also struggling a bit with the fact that we were going to have to celebrate it in our temporary house since our beautiful home was in the midst of a lengthy journey of restoration from a summer water damage disaster which upended our lives in more ways than one, especially Nico’s.

And if that wasn’t enough, we were also still reeling from the recent loss of my husband’s grandma/the boys’ sweet Abuelita so we were now prepared for Max’s birthday to be filled with bittersweet emotions. Needless to say, the lows were definitely outpacing the highs. Max’s 1st Birthday had to be the high of all highs so October could avoid being another month to succumb to a case of the “2020s.”

As a result of us being out of our own home for over four months now, Nico has had to adjust to so many new environments and that is such a huge feat for him. Plus, he has really struggled in this new virtual first grade school year as he has traversed through remote learning. There is no sugar coating that. It has been less than ideal and there have been days where I have just cried at the lack of progress I feel he is making because he is not having a typical school year like he did last year. After having such a tremendously successful Kinder year in an inclusion classroom (up until March) we were so hopeful for what elementary school would be like for him. But, COVID has robbed so much from Nico and I have no idea what to expect anymore.

I miss the social interactions Nico had with his classmates. He is already limited to who he actually interacts with typically due to his social-emotional challenges and lack of communication so going to basically zero social interactions with kids his own age (outside of the few children he interacts with at his therapy center) really makes me nervous. His classmates this year truly can’t get to know who Nico is and how engaging he can be. They only get glimpses of him through a sterile Zoom meeting environment. And, since most of those interactions show him stimming, scripting, or having a parent assist him with answering, his classmates are only seeing ONE side of Nico. This has now lead to the curious looks and the lack of “Hi, Nico” from his classmates while other kids in his class exchange pleasantries each morning with each other.

I know Nico may not notice or be aware of it (thankfully), but it resonates loudly and clearly with me and breaks my heart a little more each day. I can’t help but feel like the lows have been taking the lead in our home. However, I try to keep things upbeat in our house with lots of song and dance and hugs and kisses. There is never a lack of affection and although many people believe that children and adults with Autism do not like to be touched and do not display affection or empathy, this is a huge myth! My Nico is extremely loving and affectionate.

So, when our family showed up for Max’s birthday week it lifted our spirits and transformed our house into one of celebration and positivity on almost an existential level!

Our family drove countless hours, despite going through their own journey of grief, to make sure we could ring in Max’s 1st Birthday with a bit more pomp and circumstance like we’re used to when it comes to milestone birthdays. They know how important family is to us, especially Nico, and they showed up! It was probably the best decision for all of us because laughter and joy through tears makes everything so much better.

In those two weeks they were here with us, there was more normalcy in our lives. Nico had friends to exchange morning greetings with because his cousins are his best friends and include him in all they do. They never look at him strangely or exclude him from anything because they don’t understand him. Nor do they assume that because he doesn’t know how to initiate playful interactions with them that he doesn’t want to play with them. His cousins have always found ways to make my son feel included because they learn what Nico values and enjoys and engage him around those things. They go beyond just saying “Hi, Nico” which is what I was settling for just so that he had some sense of social interaction with others.

Inclusion like this is what I miss so much about Nico’s experiences last year in school. And, I know it is what fuels growth in all those with Autism. Nico experienced such progress and had so many positive moments because of the inclusivity that was cultivated in his classroom last year. It was nice to have some of that same inclusivity for Nico in our own home for awhile.

Having family with us made virtual learning feel a bit less tedious, our temporary home feel a bit more like our own home, and gave Nico the boost he needed to get him through a month that had us all craving some good ol’ TLC.

And, as October came to a close and Día de Los Muertos was upon us–that special day of the year where we welcome back the spirits of our lost loved ones into our home–I decided to finally take the time to display an altar. This altar would honor our family and friends who we had lost over the years. I would commit to doing it every year and then something always kept me from bringing it to fruition.

But, this year I needed to do it for my own spiritual healing. I needed to do it for my own emotional well-being too. I also felt my Nico needed a bit more family enveloping him with as much love as possible this year; this year has been a doozy for us.

It was the best way to keep family around us right now when we need them the most. With the holidays approaching, its hard to think about having to socially distance from those we need, especially when COVID is spiking again, flu season is upon us, and Election Day is just around the corner (and all that that day could incite).

Family, for me, has always been my top priority and I have a husband who mirrors those same values. And, when raising a child with special needs, you really do need family to lean on because it is HARD. To manage the pitfalls of life while staying controlled for a child who could meltdown at any moment when all you want to do is meltdown yourself…that’s HARD. This is when family shows up and takes on the meltdown, your child’s or yours, and it is life-(saving)changing.

You can be vulnerable with family and know that just like they are there on the best days, they are also there on your worst. We, special needs parents, must take care of ourselves because there are not many others who can care for our children. These are tough times and it is easy to become worn out and we don’t have the luxury of getting sick because no one can take care of our children better than we can….except maybe our family.

Make time for family right now. Especially now.

All I know is that you make time for the people that matter in your life. Despite everything, you show up. Family does this. And, I have to trust and believe that they keep showing up even if it is only in the stillness of our hearts or with a passing flutter of a butterfly’s wing. With every memory they evoke in us, family is forever.

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.