For All the Firsts

I have been very antsy as of late. Christmas is less than a week away and although I have been done with my shopping for awhile now, I am still unsettled. Normally, in the past, it was because I knew that Christmas Day wouldn’t be as magical for Nico as it was for other children, or even for my husband and me for that matter. Nico never truly understood that Santa brought these amazing gifts for him and laid them under the tree, pristinely wrapped with such care, and so waking up on this day lost a bit of its luster once Nico began his journey through the world of Autism.

He didn’t pay attention to the presents under the tree just waiting for him, nor would he rush to open all of his other gifts when everyone was doling them out at our family gatherings. He was content to just play in a corner somewhere with his little knickknacks in his own world. Meanwhile, his father and I were holding back tears and silently envying every other family whose children were ever present in these special Christmas moments with each other. It was these early Christmases after Nico’s diagnosis that made me miss my mom so deeply….all over again. I clung to this idea for so long that if maybe she was still here with us that she would have the magic touch and could transform Nico’s interest for Christmas into something magical like she always was able to do for her own children.

But, fast forward to today and Nico has grown tremendously. He understands who Santa is and that he is a special man that helps bring joy during Christmas. He also has begun to understand that the gifts under the tree have something to do with him. In these last two years, Nico has been more present with us during Christmas. He has opened gifts with eager anticipation and cheered when he or anyone around him has received a gift that was really wanted. Choosing the right gifts for Nico is a totally different story, but when it happens it’s like your life has been made because his eyes just explode with excitement and he tends to use so much appropriate language in those moments.

So, I know that the gifts he will receive this year from Santa will surely evoke the same giddy exhilaration, but I am now dealing with all new feelings of angst and discontent. And, I have been wracking my brain to determine why I can’t shake these feelings other than for the obvious reason…this awful pandemic has stripped so much of the typical joy and festivity from the holiday season. I have come to terms with the fact that there will be no large family gatherings and we won’t be opening gifts together with our family. I won’t be making a lavish Christmas dinner in my own home since we are still residing in a rental while ours is on the mend. I have reconciled with all of this, but I think what is truly affecting me this year are overwhelming feelings of sympathy, empathy and heartache.

This year has put my family through the ringer and has definitely had me longing for my mother in a way I haven’t felt in awhile, that’s for sure. But, it has also opened my eyes and heart to the thousands upon thousands of others who will be having their first Christmases without loved ones. Loved ones stolen away by this merciless virus. My newsfeed is taken over by countless stories of unimaginable loss everyday and it isn’t letting up. The deep heartache these poor, grieving families must be feeling coupled with knowing that they may not even be able to gather with their other family members for fear of compounding this loss with even more senseless loss.

The first Christmas, the first New Year’s Day, the first everything. I know these feelings of loss and longing all too well so I am here to let you know that if you are experiencing the first of many “firsts” without a parent, grandparent, child, spouse, aunt, uncle, cousin, friend, or significant other…your loss is not in vain.

Your loss is reverberating across this country through every doctor and nurse who couldn’t save their patients or allow for family to say their goodbyes face-to-face.

Your loss is being felt every time someone turns on the television and is faced with the growing number of cases and increasing mortality rate.

Your loss is being felt every time someone with pure ignorance in their heart decides to walk around carelessly without a mask.

Your loss is being felt by anyone and everyone who has lost loved ones this year or in years past and longs for their presence, touch, or voice just one more time, especially around the holidays.

Everything about 2020 has brought about so much angst, frustration, anger, disappointment, and heartache, but if there is one thing I would ask you to cling to it’s this: You are NOT alone.

You truly are not alone in what you are experiencing and I don’t think there have been more than a few times in our history where, as a nation…hell, as a world, we could say just that and really mean it. So, if you can find it in yourself to pull any kind of silver lining out of your grief this Christmas let it be this universal sense of sympathy and empathy that is absolutely rippling across the world right now.

My mom has been gone for 23 years and, although I miss her everyday, time does help with mending broken hearts and finding a sense of normalcy again. It doesn’t come without a lot of tears, a need for constant embrace, an ear to listen, and words of encouragement though.

And, since this year has been so unconventional and is causing me to think of how much I wish my mother was here, I have even thought about doing something radical like jumping in my car with my boys, big and little, and just traveling to a place where we can forget all about the sorrows and struggles we’ve faced this year. We can enjoy a complete change of scenery—since nothing about this Christmas fits the norm anyway—and just recharge our mental and emotional batteries, make new, fun memories, and ring in the new year on a high note.

I encourage you to consider doing the same thing! Be bold, be brave, and create a journey of healing for yourself that will allow you to grieve, but also allow you to reflect, remember, and make new memories that can be used to help these “firsts” sting a little less.

Remember…grief has no expiration date. Feel all your feelings, but don’t feel afraid or guilty to laugh or smile or seek a bit of merriment right now. Don’t let this pandemic steal everything from you.

So, please accept this post as a call to action, a shoulder to cry on, a warm embrace, a listening ear, or the encouraging words you may need right now to get you through the next minute, hour, day, week, or month as you grieve these “firsts.”

Merry Christmas, Happy Hanukkah, Happy Kwanzaa, and have a very Happy New Year as we kick 2020 the hell out of here and ring in 2021 with renewed hope! And, may your loved ones Rest In Peace.

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!