One Year Can Make A World of Difference

Today was Nico’s last day of school. He is officially a 2nd grader and we can finally close the door on this challenging, yet thriving school year. It seems surreal to think that Nico literally spent a whole academic year in a virtual learning environment and there were times where I didn’t think any of us were going to survive it, but here we are.

I get to sleep in a little longer tomorrow. Hallelujah!

Now, I know Nico did not learn nearly as much as he needed to because of this virtual landscape and I know he will head into 2nd grade a bit behind. But, today, as I heard Nico shout “I love you” to his classmates over Zoom who were all saying goodbye to him—classmates who have only met my son through a computer screen—I realized that Nico felt so accepted and included in his class that he knew to connect those feelings with love.

Nico always has a way of opening my eyes to things that I would have otherwise missed if I allowed myself to constantly worry about all of his struggles and the experiences he is missing out on. It’s not that I am pessimistic when it comes to Nico; I’m quite the optimist, but I feel that as an Autism mom my natural inclination is to want to eliminate as much struggle from my child’s life as possible. It’s a visceral feeling that can become all-consuming if I let it. And, in doing that, I sometimes overestimate how much of a struggle things really will be for my son.

Autism is just so unpredictable. One minute Nico can be flying high and life can be so smooth and then BAM! out of nowhere a meltdown rushes in and knocks the wind out of all of us and I am right back at the beginning of this journey with Nico, fearing the very worst and not wanting to expose him to anything or anyone else.

We did see a lot more meltdowns this school year, as I predicted we would, because of quarantine, virtual learning, and a lack social interaction, but as I watched Nico sleep this evening I thought about all he achieved and the ripple effect he had on me and so many others.

Here is my Top Ten List in honor of my Nico:

1. Nico learned the Pledge of Allegiance within a few days and recited it perfectly each morning with his class, remotely of course, with such prosody and cadence.

2. Nico can independently write every letter of the alphabet with control and more precision than I have ever seen from him before.

3. Nico was a top reader in his class and answered questions when he was called on by his teacher even though he never stepped foot in her classroom. All of his interactions were via Zoom and yet he sat and participated which was not easy for him to do day in and day out.

4. Nico began to demonstrate feelings of embarrassment and the desire for privacy. This was huge for me because it indicated to me that my son was growing up. He’s not a “baby” anymore.

5. Nico conquered his fear of using the bathroom to take care of all of his business. This one right here was a show-stopper because I really felt it may never come, but it came as a result, I believe, of #4 above. I don’t think he could bare the idea of his parents having to manage his bathroom needs like we do for his baby brother. This one also taught me that Nico truly does everything on his own time. I need to just trust in him to know when it’s time.

6. Nico started interacting and communicating more regularly with his little brother, Max and, in turn, learned how to more effectively communicate what he does not like. I think Nico picked up this new level of communication pretty quickly since his little brother definitely doesn’t know boundaries and could care less that “No, Max, no!” actually means NO! Stop! I’m done playing with you! Cracks me up just thinking about it.

7. Nico made friends with his classmates without ever meeting them in person or stepping foot into the classroom. Somehow these children just knew Nico was someone they wanted to know and be friends with and it made his year…and mine. They would cheer him on and ask where he was when he wasn’t on Zoom, which just melts my heart. I want to thank their teacher for building a culture of acceptance, hug each and every one of them and their parents.

8. Nico encouraged me (and he probably doesn’t even realize it) to make a huge change in my career so that I could continue to be present for his daily milestones, but also show him that his mom will continue to do whatever she needs to in order to give him the best quality of life.

9. Nico grew his skill sets in all of the areas that interest him the most: technology, swimming, dance, reading, and theater (mostly crying on-demand, but he is darn good). I know this child is meant to do great things in this world and I have to nurture these skill sets moving forward so that he can feel comfortable exploring them as he gets older without anxiety and restraint.

10. And, lastly, my sweet boy grew up on me. I don’t know when it happened, but I looked at him this week and I didn’t see a small child anymore. I see a grown boy who is thriving and maturing. Just thinking about it makes me choke up. He’s come so far.

I think sometimes I forget that because he doesn’t always talk to me like a typical 8 year old or interact with me like a typical 8 year old that he is stuck at an age where I need to take constant care of him. This may be true for all parents of their “babies,” but today when I looked at Nico I saw him through new eyes.

He is my sweet, endearing, funny, pensive, acutely aware first born child and he is one year smarter, stronger, cuter, braver, kinder, taller, and…

closer to the point where hopefully he’ll be able to share with me, in his own words, what a difference a year made in his life…through his eyes.

I truly can’t believe what a difference one year makes though. It can feel so sublime and significant and, yet, simultaneously represent just a notch on the timeline of your life. Some years will be stellar and some will just be survived. This year ended up being a mix of both. I’m just so relieved I/he made it through.

So to my cool, new 2nd grader…

You did it, Nico! Your dad and I are so proud of you. We love you beyond measure.

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.

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.