Being Seen

Today autism won. Today it got the best of my Nico and me. I learned today that even though Nico has grown in so many ways, he is beginning to struggle with new issues that will bring about all new coping mechanisms for both him and my husband and me. Today I felt like I never wanted to take Nico out in public again and I haven’t felt that way in a very long time.

The signs were there since the morning so we probably should’ve known, but we have our family in town and we wanted to enjoy an evening out with them. Thank God for our family though. They are patient, understanding, empathetic, and always willing to stand right alongside my husband and me as we try our hardest to manage Nico when he is having a hard day. It can be taxing and I know it’s not fun to be around, but it brings me comfort knowing they’re there with us. I feel less alone and it helps keep my anxiety that starts creeping back in at bay.

I probably should’ve stayed home with Nico and let the rest of the family go to dinner, but I thought we could manage. The whining started as we were walking out. Why didn’t I take him back in and just say forget it? Then we get there and the muffled, repetitive “time to go home” responses kick in and I should’ve just headed to the car with him. But, the kicker was when he spilled his snack all over the floor and knew he couldn’t eat them after that.

It was all downhill from there. The crying started. The bellowing followed. The angry grunts began. And, he started banging the table in utter frustration. No amount of “calm down” or “stop it, Nico” from my husband would suffice. Even after my husband feverishly picked every last one of the dropped snacks off the ground and got them out of Nico’s sight, he still could not appease our poor, struggling child. And to make matters even worse (because, why not?), Nico stood up and started screaming so I had to grab him (while seated in a huge open and public outdoor eating area, mind you) to try and get him quiet and calm. I was hoping that if I squeezed him tightly it would provide him the input he was in desperate need of at that moment.

I could feel my throat start to tighten and the tears forming in the corners of my eyes. Not to mention all the stares from onlookers that felt suffocatingly too close for comfort. I was literally going to tell my husband to give me the car keys when I looked up and saw it.

The most endearing and sincere, smiling face.

Amidst the stares and curious glances, this one woman just looked at me, gave me the most compassionate smile and winked. It happened within seconds and yet those simple gestures brought me such peace.

I work so hard to stay patient. To keep my cool with Nico even though it’s a very difficult thing to do when you are tired and have a demanding toddler to manage as well, but I try my hardest to stay calm for Nico’s sake. I know he can’t help it in most instances like today. He was over sensitized, probably tired, mad that he dropped his snack, and struggling because his need for perfection tells him that he shouldn’t have done that so I was really reconciling with all of that in order to not lose my patience or burst out crying (which is really what I wanted to do). It’s what my Mom would refer to as “grace under pressure.” This ability to hold it together when inside you’re feeling like you’re falling apart. I learned this such grace from her and let me tell ya…it’s an art.

That was what was happening to me in that moment as I held Nico close to my chest, squeezing him so he would calm down while also providing him some input to help regulate his out of control behavior. And if it wasn’t for that kind woman’s simple gestures I may have not been able to keep my grace today.

I wish I could’ve said thank you to her. It felt so good to be seen. I’d always hoped that when I flashed a smile or supportive glance at a parent, struggling with a child, that it provided some sense of comfort, but now having experienced it myself I have to believe it did. I wonder if this woman had a special needs child and knew exactly what we were going through in those moments. Or, maybe she was just a parent who knew what it was like to have an off-day with a child. Either way, that smile and wink saved me mentally.

I wish I could say her gestures were magical and changed the whole dynamic of our evening, but alas, Nico still struggled throughout the rest of our dinner and didn’t make the evening a pleasant one. However, I just kept seeing that smile and wink flash in front of me and I was able to stay composed through the rest of our time at the restaurant.

Today made me really think long and hard again about what Nico’s future might have in store for us. If we’re now moving into a stage of obsessive compulsive behaviors and the need for constant control of everything and everyone, what will these next years usher in for him? Will I be able to keep my grace under pressure forever? Will our family stay patient and empathetic? Will he have any friends? Will we ever go out as a family and be able to enjoy ourselves?

I honestly don’t know. If you asked me for answers to these questions right now, the answer would probably be a resounding NO. But, after experiencing such divine intervention (in more ways than one, I’m sure) I have to believe that there will be more…

smiles in the grocery store

winks at a restaurant

compassion from the barber

miracles worked each day by his therapists

empathy and acceptance from his classmates

willingness to come to our home so Nico can stay home where he’s most comfortable

and embraces from family and friends when they are needed the absolute most to get me through the next meltdown, breakdown, struggle, etc.

I have to remember that tomorrow is a brand new day and it quite literally could be a terrific day for Nico. That’s typically how it works in our little world. However, I also know it could be a tough day for another parent out there in the universe and I want to always feel ready to share a wink and a smile with someone in need just as I was gifted with those lovely tokens of empathy today.

I used to be so scared to go out with Nico for fear of the stares we would get from others and although today brought me back to that place of fear and anxiety momentarily, I didn’t mind being seen today because it was through being seen that I received the most peace when struggling with my son’s autism. Life’s funny that way, I guess.

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.

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.