The Struggle is Real…for Everyone

I just left the hospital where my father is having surgery and it never felt so good to breath in the fresh air. Wearing a mask for countless hours (especially with glasses where they fog up every 5 seconds) is no walk in the park. It’s constricting and uncomfortable; just downright abnormal for me. God bless these healthcare workers who have to wear them for ungodly amounts of time and still manage to comfort you with a sincere look and an imprint of a smile through their mask.

The struggle is, for sure, real for these wonderful individuals and wearing a mask is the least of them, but it did make me think.

Being a healthcare worker or a teacher or a parent of a special needs child has always come with its struggles. Our jobs are extremely rewarding, but there are days when it can be unbearable for the mind, body, and soul. I am both a teacher and Autism mom so the catchphrase, “the struggle is real” has basically been my mantra in life, but I am now beginning to feel like this is becoming the mantra for our world and it’s as evident as a crooked, tacky bumper sticker on a brand new car—it’s ever-noticeable, annoying AF, and is going to be hell to get rid of without leaving an indelible mark.

I look around and all I see are messages and signage letting us know that we are not alone. We are “all in this together.” It’s a bit surreal when you see celebrities (unshaven and without their false lashes) just chilling in their homes, sending out well wishes on Instagram. Even my local Mexican restaurant is sending out positive vibes with its daily messages of hope (and ever-so-subtle “we are still open” pleas). My heart goes out to these small businesses who have been financially crippled by this pandemic, along with hair and nail salons (just call me Rapunzel) and the restaurant and hospitality industries. And that’s just to name a few. The sheer panic, anxiety, and discomfort that has come from all of this uncertainty has every single one us activating our internal “survival mode.” We are wading through unchartered waters with no shore in sight.

But, in seeing all of this sense of community and togetherness, I have come to the realization that I am truly not alone in my feelings of struggle, anxiety, and grief. Never before have I felt such solidarity, in struggle, amongst humankind as I do now. Now, don’t get me wrong….struggle is a very relative term and I am not making light of any struggles that were there before this pandemic because I have suffered my own struggles in the pre-pandemic era, but I truly believe that even those who have been blessed and privileged with a struggle-free life are finding themselves struggling in ways they could never have imagined. And, for this Autism mama….I find a bit of comfort in that thought knowing that empathy and a sense of community are (hopefully) growing.

No longer is it just Autism parents struggling with their kids’ needs and wants and their meltdowns and regression. I have been talking to many of my friends with neurotypical children and they are struggling with their kiddos not wanting to sit and do schoolwork virtually or go to sleep at a decent hour. They’re just as worried about their kids regressing because of a lack of structure, socialization, and explicit academic instruction. I feel so badly for my friends who have kids graduating this year; they are feeling so helpless because they cannot orchestrate efforts in a manner that allows for celebration and communal recognition. The countless high school and college seniors who deserved to enjoy all of those quintessential milestones like prom and graduation, but instead have to be celebrated and recognized from afar and in a sterile, virtual environment. It all just stinks.

And, I know it isn’t just Nico who is longing for the comfort of his classroom and his friends and a daily routine that made sense to him. All of our kids are struggling with this new normal that has cut them off from so much socially, academically, and physically.

For the first time ever, I am realizing that the struggles and the grief and the uncertainty that I am feeling are no longer just reserved for me as an Autism parent. It is being felt by everyone due to this pandemic. For Autism parents, we become somewhat immune to the feelings of loneliness and isolation, but now our world is feeling this same sense of isolation and loneliness. It isn’t just me who yearns to be more socially active with my son, but can’t for fear of what could happen. Nico has come so far, but I still worry every time we leave the house that something adverse will happen and cause him to struggle and flail. These fears are now synonymous with the fears of countless others due to the risks of COVID-19. We must limit our social interactions and travel so as to decrease our chances of getting sick or worse. The similarities in all of this, for me, are unbelievably palpable.

We truly are ALL in this together.

I hate knowing that, because of this pandemic, I will not be able to sit with my father after his surgery. It’s inconceivable to me to think of him recovering without me by his side so I can’t even fathom the thought of families being separated during a loved one’s last breaths. Healthcare workers unable to hug their children when they get home from a 24 hour shift. Fathers not being allowed in the room when their wives are giving birth. Or, a husband speaking to his wife of 50 years over FaceTime for, possibly, the last time before she is placed on a ventilator. These are real struggles and they are universal.

All of this that we are feeling is universal. The struggle IS real and it’s heavy. But, if raising a child with Autism has taught me one thing it’s this—you never know how strong you are until you have no other choice. Autism brings with it so much wonderment, but it also provides its fair share of heartache that can be hard to stomach. However, I never would have thought I could survive Autism and all the struggles that have accompanied this diagnosis, but not only am I surviving; I feel as though I have been thriving too. There is something to be said about a “healthy struggle” and I truly believe that although we are facing many struggles, not all of them have to be adverse. We should take this time to recognize and feel all of our emotions as they come, while also finding strength to push forward through them.

I am taking every day as it comes (as I have done since I began my journey with Nico through the world of Autism) and will continue to find silver linings everywhere I can. This helps me cultivate a healthy struggle with the circumstances that I have been dealt. These pandemic-era struggles will soon subside and we will, once again, find our rhythm, but for now bask in the silver lining that has been unearthed for us during these tumultuous times and that is: TOGETHERNESS.

And just to show you that I practice what I preach…my current healthy struggle is knowing that, because of this darn coronavirus, the 3-second rule no longer applies so the cheese stick I just dropped on my floor can’t satisfy my ferocious hunger conjured up by a 3+ hour waiting room stint. I just pitched it in the garbage….sigh. At least I don’t have to log those calories for the day now….silver lining!

Teachable Moments

Nico was not able to sit and do any of his schoolwork today. I had a feeling it was going to be a tough day as soon as the first meltdown started ten minutes after he woke up. First the whining began for no reason. Then, he started making weird noises that got louder and louder. He does this for attention because he knows I do not feed into his behaviors if they are petulant. Lastly, the screaming, throwing himself all over the couch and floor, and hitting began.

He was in the thick of a meltdown (probably just a tantrum since nothing had happened yet to trigger him) and it was only 9am. Today was going to be a long day. I said this to myself and immediately wanted to crawl back into bed, lock my door and shut the world out.

Instead, I gave Nico the “evil eye.”

I have become a whiz at giving the “evil eye.” This particular eye was something that scared the living hell out of me in my childhood whenever my mother aimed it my way. It scared the hell out of me when she aimed it at anyone in our house actually. The eye meant she had had enough, you had worn down her patience, and she was about to blow. Nico has become the recipient of the evil eye now, when he decides he is going to be difficult for no apparent reason, and he hates it. He will do basically everything in his power to get me to smile and stop giving him the eye because he does not like it when I get upset with him. From literally trying to push my lips into a smile with his hands to saying “no thanks..no thanks” over and over again, Nico knows when he has pushed me to my limit because it takes a lot. I have to laugh because my husband doesn’t quite have the same effect on Nico so even he is convinced of the power behind this ominous optical gesture of mine. Sometimes I want to burst out laughing because the effort that Nico goes to in trying to reverse my grim demeanor is ingenious as well as endearing.

I also chuckle in knowing, with 100% certainty, that I have turned into my mother and I have to say…I’m liking this maternal power I have cultivated. Ha! The evil eye is mine!

However, this meltdown/tantrum has proven to me that even though Nico has Autism, he is still a typical little boy who knows how to instigate, antagonize, push my buttons, and manipulate a situation. He is very smart. We knew that early on despite his lack of language, social skills, and age-appropriate behavioral skill sets. Nico knew how to problem solve very early in life, due to not being able to communicate with us, and I marveled at how hard he worked to help us understand what his needs and wants were. Nico is also very intrigued by cause and effect relationships; therefore, telling him “no” only fuels his interest more in wanting to do the unacceptable action.

So, I have begun to take these skill sets that Nico excels in and put them to good use now that we are having to learn outside of the classroom with me as his primary teacher. I am realizing more and more that Nico’s academic path for the rest of his Kindergarten year cannot be solely focused on literacy, mathematics, writing, and science because it is just too overwhelming for and unfamiliar to him. And, I’m ok with that.

My goal for my Nico, moving forward, is to teach him how to survive in a world that does not always lend itself to an atypical brain like his. I am going to teach him how to use his incredible problem solving skills, his intrigue with cause and effect relationships, and his masterful art of persuasion and manipulation to his advantage.

I have been reading article after article about the concerns parents, teachers, schools, and universities are having over the fact that students are not in school. Concerns that students are being forced to engage in environments that are unfamiliar and not effectively conducive for learning. It’s a constant topic circulating on social media platforms. This idea that parents are being expected to home school their children while also fulfilling their own work obligations virtually is all just so unrealistic and counterproductive. I feel for my fellow parental comrades, especially my Autism and special needs parents, who are feeling so defeated and overwhelmed with the current state of their child’s school year. But, I promise you…it’s going to be ok. Our kids are still going to become teachers, doctors, lawyers, and scientists.

And you wanna know why?

Because this is the time to make a concerted effort to teach our children life skills. It’s time to build their capacity in skill sets that, coupled with academics (which they will receive again sooner or later), will best prepare them for adulthood and foster a greater sense of independence. Independence is something that my Nico must painstakingly work towards everyday because my husband and I will not always be here to advocate for him and there is no guarantee that anyone else will.

Think about this…there are thousands of wonderful people out their sewing masks to help stop the spread of COVID-19. If those same people also take the time now to teach their children how to sew imagine the ripple effect it will have if we are ever faced with something like this again. I was never taught how to sew by my mom. She always told me that knowing how to sew was not going to be nearly as essential for me as it was for her because times had changed. Just like my dad never taught me how to change a tire because he said all I would have to do is call AAA and they would come out and do it for me. Hence why, to this day, I anxiously await my membership renewal in the mail and feel so comforted when I take road trips with my husband.

These two life skills alone are essential now more than ever. We are being expected to wear face masks whenever we go out in public so unless you can snag some off of Amazon for an insanely inflated price or know someone who did learn how to sew and can make you some, you best learn how to sew. And don’t even think about asking someone to come change your tire in an expeditious manner during a pandemic. Car repair and emergency maintenance companies are running on skeleton crews, if they are even still up and running at all. These life skill sets can easily be turned into “teachable moments” for our children during these times of school absence.

I have been taking the time each day to find “teachable moments” in whatever I am working on in the house. When Nico wants to read a book, I am teaching him how to read with intonation so he can bring every book he reads to life. When I’m washing the dishes, I am explaining to Nico which dishes belong in the dishwasher and which ones should be hand washed. When I’m cooking dinner, I explain to Nico that he cannot touch raw chicken or a hot stove. I show him what a well-balanced meal looks like (in the hopes that one day he will sit and actually eat one with us)–a protein, a starch, and a vegetable–and have him label each of the items with me.

Nico understands now that when you leave a room, you turn the light off in that room to save electricity (a lesson that has become invaluable as of late). He also knows that when he feels crumbs under his feet it’s time to get the vacuum and will point to its location in the laundry room. My husband is showing Nico how to skim our pool and explains to him the importance of keeping debris out of the skimmer. Nico has also learned where to find bandaids and ointment for when any of us gets a cut or abrasion. He may not be able to fully pronounce Neosporin or know how to apply a bandaid, but his problem solving skills will always ensure we are taken care of in these situations.

All of these teachable moments have layers of learning built right in. Nico is learning new vocabulary, he is learning more cause and effect relationships, and he is figuring out various solutions to problems that may arise. The point is, Nico is still learning daily. I may not be able to get him to sit down in front of the computer and do his sight word search or addition and subtraction math problems, but our days are not forgone when it comes to learning new skills.

Now is the time to teach your kids first aid, how to use a knife safely, the best way to mow the lawn, and how to make their bed each morning. This is the time to show them how they can add value to their lives and the lives of others. Do not be hard on yourself and think you are failing just because you’re struggling to manage home schooling while still working full time from a location that can be anything but conducive for productivity. Do not be beat yourself up because you are spending more time on trying to keep everyone in your home healthy and mentally sane in the midst of a global pandemic as opposed to completing every online assignment.

In my opinion, we’re doing pretty darn well amidst this chaos, but if you’re feeling like you’re doing less than ok right now do not, for one minute, think you are alone. We’re all trying to wade through this storm together.

And know this…we are all ROCKSTARS whose children are going to come out of this perfectly fine.

So, close up your kid’s Google Classroom for the day, kick your feet up, open a bottle of wine, and make a list of all the teachable moments you are about to bestow upon your children because they are going to learn infinitely more from those moments than anything else right now.

How do I know this? Because they are coming from YOU!

Social Distancing Silver Linings

I danced with Nico in the kitchen today and as I held him in my arms (yep, he still loves nothing more than to be picked up and held tightly by his mama) and waltzed back and forth with him I couldn’t help but cry. I didn’t let him see me; he gets very upset when he sees me upset. Nico feels emotions for others very deeply. Many individuals with Autism do despite what you may have heard.

I cried because we are at the one month mark of social distancing and Nico is clambering for the comfort of his everyday routines, which included his wonderful school routine. He has had to completely readjust to a brand new way of daily life with much less structure and no real socialization and it’s been a struggle, to say the least. It’s a crapshoot with doing schoolwork on the daily because he doesn’t see me as a teacher (which is ironic because that’s my life’s work) so he gets frustrated and more aggressive. I’m lucky if I can get him to sit and concentrate on his virtual assignments for twenty minutes a day. He has been giving it his best efforts, but today he was really in need of some major input. So, I picked him up, rested his head on my shoulder (which he didn’t even resist) and we danced together, just mother and son.

That was my silver lining for the day. I have been trying to find at least one silver lining a day so I can look at this hot mess of a situation the world is in with a “glass half full” attitude. And, when I sat down to really think about whether or not I truly have enough silver linings to see my glass half full, in regards to these unnerving times, I was pleasantly surprised. Truly…

Oh, did I mention I was furloughed from my job because of this awful pandemic until God knows when? Yeah…so I am actually beyond grateful for these silver linings because without them I would probably be curled up in the fetal position in my closet right now.

Social Distancing Silver Linings:

I am becoming quite the little baker and actually using the recipes I find on Pinterest. They’re not just collecting cyber dust in my camera roll and Pinterest boards.

I’m sleeping in (after I force my body to fall back asleep when it wakes up at 5:40am) until at least 9am everyday. Probably helps that bed times have totally gone to hell for Nico and he’s also sleeping in with us.

Getting my baby, Maximo, on a strict sleep schedule early on has paid off royally because he literally takes three naps a day and still manages to sleep in with all of us each morning. This baby of mine is a daily silver lining, hands down.

I have actually cooked with fresh vegetables and not just canned or the ever-convenient “steam in a bag” variety. I feel like a regular Food Network chef, chopping away and putting my wedding cutlery set to work like it’s never seen before.

I’m saving hundreds of dollars on self-beautification since no nail or hair salons are open, along with Sephora and the MAC counter at Nordstrom. Thank God I’m married and have a built-in self-esteem booster in my husband. He sure knows how to make me think I’m a “natural” beauty. Poor guy…at least I’m still shaving my legs.

I was able to binge watch every season of Schitt’s Creek, uninterrupted, and now have a whole new appreciation for Etsy. I have about $300 worth of Schitt’s memorabilia in my cart that I swear I am going to purchase once I get off this darn pandemic budget.

Ok ok…those aren’t my most cherished silver linings. I’m just thankful I have those because at the rate we’re going in flattening this curve, I don’t want to run out.

Here are the real silver linings in my life that are keeping me sane, thinking positively, and feeling the most hopeful I have felt in a long time (ironically):

Nico has used the most functional language in this last month than he has ever used despite not being in school or having any ABA therapy.

Nico has been reading nonstop and, when encouraged to read aloud to me, he is not only reading with little to no help from me, but he’s reading with tremendous prosody and precision.

My husband and I have been able to sit together and marvel at how blessed we are. It still doesn’t seem real that we have the two-child family we always hoped we’d have. I think that’s why we catch each other’s loving glances when we are sitting on the couch with our boys on our laps.

I’m not missing out on any milestones with my baby, Maximo, because of a hellish work schedule that would normally have me traveling weekly. He’s rolling over, starting to eat solids, and beginning to pre-crawl when we put him on his tummy. It’s magical to watch.

Nico has been growing more and more attached to his brother and is showing him love and affection without being prompted. I know he knows that Max is his forever friend.

Maximo is getting a chance to step inside Nico’s world by simply observing him throughout the day and it’s the most beautiful sight to see when Max locks eyes on his brother. Whether it be when Nico is stimming or scripting or reading the same book for the umpteenth time, Max adores his big brother in a way that gives me infinite hope for the amazing friendship they will build for life.

My family is healthy, we have food on our table, a roof over our heads, and family who will always look out for us, even if it’s from afar.

And…

Despite all the stress that this pandemic is causing in my life, I am feeling such a sense of peace every day when I wake up. I look forward to what the day has in store for my family and me as we make more memories together, laugh together, eat our meals together, fall asleep together, and just know that we can have uninterrupted time together.

Those are my true social distancing silver linings thus far and I am so thankful that I am able to find them amongst all of this upheaval.

Our world is in a major state of emergency right now with no apparent end in sight. It’s scary and unnerving. There is a lot to be upset over. People are losing their lives. Families are being kept apart. Economies and ways of life are being dismantled. It’s hard to find silver linings in the midst of all of this.

But…

I have to believe that this has been a wake up call for our world. This pandemic has forced us all to stop and take note of what not to take for granted anymore. Family. Friendship. Money. Work-life balance. Convenience. Faith. This pandemic has stopped us from uttering the words, “One day, I am going to [fill in the blank]” because we have nothing but time to figure out how to get it done.

Nothing will ever be the same after this is over and I hope that that’s true because we’re all in need of a reboot. After all, this isn’t just a wake up call for one or two people, which doesn’t effect change in any real global way.

This is a wake up call for the world, which means change is inevitable since there is power in numbers.

No longer will we be allowed to say “One day, I will…” because that day is now. We have no excuses anymore. When this universal curve is flattened, our world’s “one day” will be its Day One and all of mankind will be at that starting line ready to begin anew with a bit more wisdom and perspective to show for itself.

That’s the world’s silver lining, as I see it, and that keeps me so hopeful for our future.