Riding the Wave

I got out of bed at 5:45am today. Not to take a shower or prepare lunch and pull out clothes for another school day. Nope. I got up to bake a cake.

On a Wonderful Wednesday.

No…it isn’t for a birthday or a special occasion and this Wednesday isn’t extraordinarily wonderful for any particular reason. I baked this cake because it was either that or have a good old fashioned nervous breakdown.

It has been hard to sleep. I toss and turn for hours thinking about how the day went with Nico and dreading another day just like it. This social distancing that the coronavirus pandemic has ushered into our lives has really thrown my kid for a loop and we’ve only been doing it for about a week and a half. Nico thrives on routine. He feels his most at ease and regulated with a series of routines because they are predictable. Nico doesn’t do well with the unpredictable. So, not being able to get up everyday, traverse through his morning routine to get ready for school, and then be shipped off to his classroom filled with all of his friends and people who make his day brighter has been so difficult for him. And me.

In this last week and a half, Nico has shown basically every human emotion one could have… in a single day. He can go from being deliriously happy, laughing incessantly (at God knows what) at a stadium level volume, to abysmally sad, crying the biggest crocodile tears I have ever seen for some unknown reason. He will seem totally content and then you ask him to do one thing or even look at him a second too long and he wants to rage. He has been doing a lot of yelling and shrieking and wanting to hit us way more frequently. But, his stimming has been so incessant. Not even my tight squeezes can regulate him. It’s truly like he is going through school/daily routine withdrawal and I fear he is going to regress. The only behavior that I am actually not minding or worrying about as much is his scripting. Normally, I would be trying feverishly to figure out why it’s increasing, but I know why it is at this point and it’s actually quite endearing, if I dare say so myself .

I have been trying to find some Social Distancing Silver Linings amongst all of this chaos and one silver lining has been the amount of reading Nico has been doing. He absolutely loves the Froggy series by Jonathan London so he has been reading and memorizing every one of this man’s books! Now, because he has memorized all of these books he is doing a lot of scripting and walking around our house fluently speaking in “Froggy.” It does get unnerving at times when he chooses to script at an insanely high volume, but I have to keep telling myself that he is struggling and his brain is totally overworking. Plus, with every word that Nico vocalizes I feel a bit more hopeful that he will eventually be able to string all of his words into functional conversation.

This is one of the few ways I’m trying to stay positive and keep things in perspective. I also remind myself daily that, yes, my family is safe and healthy, we have food and toiletries (for now), and still have a steady income to count on. We have been able to spend quality time together and share in special moments with each other that might have otherwise been missed if we hadn’t been forced to stay at home. I am beyond thankful for these silver linings, for sure. But, when I see the complete and utter frustration and desperation on my son’s face when he can’t get a certain word out or is having trouble focusing on a virtual school assignment because the scripting is just too overpowering, I want to just breakdown. No parent wants to ever see their child struggle. It’s heartbreaking. And, yet, I’m seeing it everyday in one way, shape, or form with Nico and it’s unbearable.

Last night, Nico kept trying to tell me the name of a book he wanted me to find for him on YouTube. Nico loves to listen to others read books aloud. It has helped his communication and reading comprehension skills tenfold. He kept trying to pronounce this one word, pausing and working his brain so hard to vocalize it. Through his eyes, I could actually see the mental gymnastics his brain was experiencing. However, I could not figure out what he was trying to tell me, nor could my husband. After a good five minutes of this back and forth struggle, Nico looked at me with such disappointment in his eyes that it nearly stopped my heart from beating right then and there. He walked away from me feeling defeated, disappointed, and saddened and I knew it because he looked back at me as he walked upstairs with such a distraught face. Talk about an emotional punch to the gut.

I was already a wreck that day from trying to manage his meltdowns, refusals to work with me on class assignments, and the fact that I had barely been able to play with my five month old due to balancing my workload, Nico’s classroom workload, and his mood swings. And if that wasn’t enough, I couldn’t help but watch my husband kill himself in ridding our pool of thousands of fallen leaves and beautify our backyard so that Nico could get some output in the pool, on his trampoline, and on his new swing to help regulate himself. This yard work my husband was attempting to complete would normally take a full day, if not two, but he was frantically trying to finish it in a matter of three hours…all for the health and well being of his son.

So, when Nico stormed upstairs I willed myself to not burst out crying for the umpteenth time and, instead, jumped on a web chat with my family to dull the heartache and try to salvage what was left of my train wreck of a day.

Ups and downs like these have become way too familiar for me during this darn pandemic. We are all riding a wave of emotions everyday, trying to navigate around each other (and our ever-changing emotions) so that we can survive. Fear is becoming more and more of an everyday feeling for many of us due to the increasing number of virus cases and deaths across the nation. Feelings of frustration and desperation are creeping in every time we cannot find an essential item at the grocery store. I know, for many Autism parents, full blown panic is setting in because when your child only eats one kind of chicken nugget or only drinks one type of V8 Fusion juice and it’s nowhere to be found a major meltdown is going to follow and extremely necessary calories are going to be lost. But, I have even been able to find a Social Distancing Silver Lining hidden amongst all of this panic as well. Because we, in the Autism community, are so fiercely protective of each other, when we see a family reaching out on social media desperately in search of a certain food or beverage for their child, we spread that news to every corner of the world until the family is inundated with that invaluable item for which they were on the hunt.

Talk about an emotional roller coaster! Desperation one minute and the next…celebration and utter relief. Instances like those definitely have me reeling emotionally and mentally lately. And physically… don’t even get me started on the stress/boredom eating…hence why subconsciously I woke up at 5:45am to bake a cake (even though I told myself it would be for my father who has been dying for something sweet and having to go without because our grocery stores are barren).

But, whatever the reason may be, as I prepped and baked my cake this morning I found myself basking in the glow of my mental tranquility. Although I had had another restless night, I didn’t feel tired. I wasn’t anxious or feeling any dread about the impending day. I was calm and present in the moment. And, I think that that was because I know this, too, shall pass and I know that we’re all in this together. I also decided to recite my mother’s favorite prayer, The Serenity Prayer to myself a few times, which seemed to pull her closer to me in that moment.

So even though I woke up way too early to quell, yet, another pandemic-induced emotional breakdown, I realized it was just what I needed—a blessing in disguise— and I got a scrumptious yellow cake with chocolate frosting as a bonus. God bless Duncan Hines!

Now, onto Thriving Thursday and Fabulous Friday!

Celebrations and Reflections

For parents, there is nothing more exhilarating than when your child achieves something monumental or reaches a major milestone in life. Our lives are made on days when our kids come running to us with such great news no matter how old they are. I lived for sharing my achievements with my parents, especially my mom, because she was one of the most emotive women I ever knew (other than myself, but the apple did not fall too far from the tree). Her whole body exuded elation and she would hug me so tightly. I always felt so accomplished in my parents’ eyes.

Now, what one person considers a huge milestone or achievement another may consider just a stepping stone towards something greater. As a parent of a child with Autism, the milestones and achievements we celebrate come in all shapes and sizes. While some parents are out cheering their kids on at athletic events, academic decathlons, or artistic showcases, my husband and I are setting up balloon drops and confetti shooters (this is how you know it’s a huge achievement because confetti is a neat freak’s worst nightmare) for when Nico, our seven year old, finally goes poop in the toilet. Nico has not been able to use the toilet to go #2 no matter how much we have worked with him. We have had our therapy team at our home basically around the clock all weekend long multiple times with no luck. When Nico recently (and finally) voided #2 in the toilet—you probably had no idea there were this many ways to refer to a bowel moment, did you?—he not only surprised us, but totally surprised himself because he had no idea what to do with himself once he was finished. All we heard was him saying “uh oh” over and over again from the bathroom so we ran over to him and discovered his recent achievement! What followed was nothing short of a Gloria Estefan-style conga line, filled with cheers and laughter and tears of joy. Nico knew he did something outstanding and my husband and I could see the pride radiating from him.

Nico has reached some other great milestones worth celebrating as well. He successfully withstood a full day of traversing from one department store to the next in search of new clothes for he and his baby brother. He was content in the restaurant his dad and I dined at after our shopping spree and even hung on as we boldly attempted to squeeze in a quick visit to the grocery store before we headed home. He also sat through an entire haircut without a meltdown or one bit of crying. I never thought we would see this day come! This feat had me chanting Nico’s name like a maniac through the phone as I boarded a plane so you can only imagine the stares I got, but I could’ve cared less!

Now, why is this all worth celebrating? Well, because just a few short years ago, Nico would have never withstood any of this without a meltdown. He would’ve thrown a total fit as soon as we got close to a store parking lot and would have never allowed us to enjoy a meal in a restaurant. One of us would have had to sit in the car with him while the other ate and then we would have had to switch or just ask the waiter to pack up our food to go. In those first few years after his diagnosis, I truly believed I would never be able to enjoy a day out with my son. I envisioned a life of lonely shopping sprees and picking up food to bring home because eating out would never be in our future. I was resigned to the idea that Nico’s gorgeous face would be hidden under an unruly mane for the rest of his life because haircuts were just torture. But, to know now that Nico can hop in the car with me at a moment’s notice and shop right alongside me without one ounce of distress is worth a World Series-size celebratory parade just in his honor.

With that said, Nico did not reach this place in his life all on his own and it certainly was not just because of his parents’ dedication and commitment to him. While Nico is the celebrity in our home who we celebrate most, Nico is surrounded by his own troop of celebrities. These individuals are who we also celebrate on the daily. They are true celebrities in our eyes because they work tirelessly, day after day, to ensure Nico progresses and thrives. These celebrities include:

Nico’s ABA Therapists at the Promise Center for Autism: these selfless, miracle workers have truly worked miracles with Nico from the moment he started at the center in September 2017. They have contributed to Nico’s ability to share, communicate his needs and wants in short sentences, and his negotiation skills. Imagine hearing your child say to you, “five more minutes” as you request his presence in the bathroom to brush his teeth. This skill has truly transformed many a potential meltdown into tempered exchanges that are much less aggressively charged. With the creation of a laminated social story Nico has learned how to take turns, have “nice hands,” sit through a haircut, and not injure himself when he gets frustrated. Any time I ask for them to make a social story for Nico it is done by the next session. I never feel like I am managing my son’s complex needs alone. Nico’s therapists are like family to us. They love our son and advocate for him as if he was their own. All they do is figure out ways to help Nico excel and they are always ready to problem solve with us when we hit a roadblock on our journey. My husband and I know Nico has a true shot at a neurotypical life with these celebrities by his side, supporting, nurturing, and challenging him every step of the way.

Nico’s Kindergarten Teachers: These two ladies are true gems! I was scared beyond words to send Nico to a mainstream public school after only ever having him in therapeutic program settings so I struggled at first to give this DYNAMIC DUO a chance. I remember sitting across from them in Nico’s IEP meeting before the school year started, questioning whether or not they were ready for this challenge. Ready for a tiger mom like me to be on top of them everyday, wanting updates. They kept reassuring me that they would do whatever was necessary to provide Nico with the best educational experience they could. As a former teacher, I knew I had to give them a shot because they were openly and willingly asking me for it. That’s why they were there in that room. Boy, am I ever so glad I did! These two young ladies–one is the general education teacher and the other is the special education teacher–have moved mountains to teach Nico this year. They have gone above and beyond to create an environment that is comfortable for Nico, welcoming for him, and customizable just for him. They have also built such an unbelievable classroom culture of inclusion and empathy that has taught Nico’s classmates to fully accept and embrace him for who he is. Nico’s special education teacher works tirelessly in giving Nico an optimal learning environment, even if that means she has to walk the halls with him when he gets over-sensitized. She will text me during the day if she thinks Nico is struggling and needs my help or if he is having an exceptionally good day and wants me to share in her excitement. Nico’s general education teacher accommodates Nico by providing him with a safe place to sit when he needs a break. Allows him to script when asking the other children to silently work because she knows it helps regulate my son. These women have monumental patience and take each day as it comes with Nico. They know that every day may bring a new challenge, but they do not ever let that deter them from giving the best to my son. I know I will not have this experience every single year of Nico’s educational journey, so I plan on celebrating these two remarkable educators everyday while I have them by my side. They are the true celebrities in my life, as well as Nico’s.

Nico has been truly blessed to have such a strong support system that reaches further than his family and friends. But, with all that is happening to our world and our nation right now, I am beginning to have feelings of desperation knowing these local celebrities of mine cannot work their magic with Nico as planned. We are moving into uncharted waters as a nation and our educational system is being tested like never before. My son will be out of school and without therapy for the unforeseeable future and with every day that passes, I feel like I am losing the momentum we have been building this year. I know I do not have the luxury or the complete arsenal of resources and educational background to tackle all of my son’s needs on my own so I am experiencing those ever-familiar feelings of quiet desperation for my son once again.

Many families are being faced with the same challenges, knowing their children will be out of school for weeks, if not months, but when you are a special needs parent, the weight of this educational and therapeutic void is crushing. We are becoming the teachers and therapists now and I am seeing more and more posts and memes on social media highlighting the much needed respect our educators and therapists are receiving from panicked, exhausted, and frustrated parents. Teaching has been such a thankless job for so long to many people who took educators for granted. Every time I would hear that ridiculous saying, “Those who can, do. Those who can’t, teach” I would want to scream. However, this old adage is being debunked like never before! In this last week, I have seen educators all over this country take learning environments from brick and mortar classrooms to virtual learning settings in a matter of hours. No state agency or branch of government has ever been able to move as quickly or efficiently in anything it’s done like this…ever! From this moment forward, our nation will have to rethink how we value educators because they are becoming the true change agents during these uncertain times. And, do not ever again let anyone persuade you into thinking that teachers are anything less than ingenious, problem-solving pragmatists because chances are, a teacher has your back right at this moment.

They are the real CELEBRITIES and may we never forget these moments in time because these moments will, for sure, be defining humanity for years to come. I am just so thankful that I have some of the most profound celebrities supporting me and doing all that they can for my son. This has been, by far, the most invaluable silver lining of my family’s social distancing (aside from Netflix streaming every season of Schitt’s Creek) and I am forever indebted to these amazing individuals. Now, let’s flatten this curve! We still have a lot to do in 2020!