The Great Regression

I knew this wasn’t going to be easy. The goal was to take it day by day. It was not supposed to be this long. This was not supposed to be the new normal.

March was just supposed to bring with it an extended Spring Break and then back to school he would go. The year would continue. Progress would continue. The pit in my stomach would continue to dissipate a little more each day because Nico would thrive a bit more each day.

It is now May and my sweet boy is missing out on so much. He has been isolated from the real world for far too long. For him, being home reading his books (over and over again) is completely normal for him, but that was something that school had really changed up for him and I had welcomed such a healthy change of pace. So much of the Kindergartner that I was seeing in him on the daily is disappearing and what is presenting itself now is eerily too familiar.

Nico is regressing.

I can see it every time I try to play with one of his things. His ability to share has started to wane because he has no one to share with anymore. No peers to interact with daily. No one to hold him accountable and show him how to share other than his parents and it’s just different when it comes from us. School was doing wonders for him in this department. He’s not as focused on what I’m saying or asking him anymore. He responds with a “yes” to basically every question I ask whether it be about reading, math, or writing and before I even finish asking it. He is getting easily frustrated when he makes a mistake or answers something wrong and that is leading to more self-injurious behaviors. Banging his hand on the table in protest is something I am having to combat again. Virtual learning is the furthest from Nico’s comfort zone and it is taking a toll on him…and me.

The meltdowns have become more frequent too. This is extremely jarring for me because it takes me back to our early diagnosis days where we couldn’t go a day without a meltdown. Because he has been without speech therapy, academic instruction, and socialization, his communication is regressing. He is becoming more frustrated again when he can’t find the words to voice why he is upset. This is leading to aggression.

Mother’s Day 2020 left me a bit shaken and scarred…literally. Nico’s meltdown caused him to scratch me pretty badly and that rocked my world. He had not had a meltdown like that in a long time and not only did it last for several minutes, he was aggressive towards me in a way that was completely unrecognizable. My sweet boy is loving and affectionate so I could never truly imagine a world where he would be anything but that. I think that’s why this meltdown affected me so deeply. I went to bed panicked that this quarantine may have sparked a new chapter in Nico’s journey that would cause him to start becoming more aggressive. It’s dramatic to think like that, but there are several children and adults on the severe end of the spectrum and they are physically aggressive to themselves and others daily. My heart breaks for them and their families every time I read one of their stories. That’s the side of Autism which isn’t talked much about in mainstream media, but it’s a serious concern for Autism parents.

Ever since that meltdown I have felt my anxiety levels increase and a sense of hopelessness start to creep in. It has also made me sit and reflect on how I’ve been feeling overall with everything that is going on and I am realizing more and more that I, too, may be regressing. I, honest to God, feel myself losing track of hours and days. I can’t formulate words or thoughts as easily anymore. Baking and cooking have been keeping me sane and working out has been keeping my endorphins somewhat elevated, but any time your child is struggling it affects you 10x harder so, needless to say, the anxiety has felt Herculean. I’m feeling myself losing hope. I know it’s probably because I’m antsy and tired of being cooped up. I’m stressed out because of the current situation, but nevertheless I’m feeling like optimism is slipping away.

I’m seeing so clearly now that Nico continues to have major deficits and it’s scaring the hell out of me. He can’t write anything other than his name. He can read so well—truly can read anything—but when I ask him simple comprehension questions he cannot communicate those answers to me. He can’t sit still for more than two minutes. He’s scripting and stimming nonstop while I try to get him to focus on his schoolwork so I know he is not fully aware of what I am trying to teach him. And, at the end of the day, Nico is not talking to me. We can’t even talk about how he’s feeling being out of school and away from his friends because he simply cannot verbalize his feelings and it breaks my heart. I know my sweet boy misses school but we can’t talk about it because Nico doesn’t communicate functionally and I have no idea if he ever will.

What I’ve learned is that Nico and I aren’t living in a cooperative world. We’re living in parallel worlds, looking through glass at each other. Nico opens a window into his world every now and then and lets me in, but it’s not everyday and it’s not for too long.

I have worked so hard these last five years to fill every inch of myself up with hope and push myself to believe that Nico will be just fine. My husband and I have sacrificed so much and will continue to give (up) everything we can to ensure Nico has the best quality of life, but what if that’s still not enough?

I cringe whenever I allow myself to even utter that question aloud.

Darn you, COVID! We have come too far to fall backwards. I’m too tired. Nico should not have to work twice as hard just to get back to square one. I can’t have the same conversations with his therapists and teachers again about behaviors and goals that he had mastered, but now has to remaster because he has regressed. And I can’t even think about what this “new normal” is going to do to our school system, but, if the CDC has anything to do with it, it will be a nightmare. I understand the rationale for all of these precautionary measures; however, after I read their guidelines for reopening schools in the next school year I almost stroked out. No child should be subjected to an environment like that, but kids like Nico will struggle in all new ways and I cant fathom my son suffering through that regardless of how resilient he is.

I’ve been talking to my other Autism moms and I know I’m not alone. We’re all feeling so defeated right now. And I know that these feelings aren’t just reserved for special needs parents. This pandemic is taking a major toll on all of us parents and our kiddos.

This is hard. There’s no handbook for something like this. I just have to reserve the right to feel sad and grieve. So, today I am going to grieve the childhood my son deserved and is missing out on…and that has everything to do with the pandemic, not Autism.

Ironically, Autism has done a tremendous job of preparing us for social distancing. At the beginning of our journey with Autism, we spent plenty of time at home not wanting to be social for fear of what it might trigger in Nico. So, in this respect, Autism has managed to come through for me and produce a social distancing silver lining amongst all of this regression. It truly does bring about so many unexpected surprises.

Let’s hope better days and good things are coming…

To My Boys on Mother’s Day

Mother’s Day will forever be a bittersweet day for me; I yearn for my mother to be by my side. It’s one of life’s real cruelties to lose a mother, especially at a young age, because a mother’s love is one that can never be replicated. It’s one of a kind. The bond my mother and I shared was truly symbiotic.

The job of a mother is, ultimately, the most important job. We literally bring life into the world. When I held my boys in my arms for the first time, my life was forever changed. It was no longer just mine. An equally over-joyous and overwhelming feeling consumed me when I thought about the immense responsibility I was about to take on as a mother, yet I couldn’t imagine anyone else taking care of my child better than I could so I took that baby in my arms and motherhood commenced. The bond was formed between mother and son.

My boys are my life. I live to just watch them be their unique little selves. And, the biggest silver lining to come out of this nightmarish pandemic is that I have been able to spend so much quality time with them together and separately. It truly has been a blessing because it is these times that will help build the bond between my boys and strengthen the love they have for each other. These moments will also help cement their bond with me, I hope, and teach them that a mother’s love is all-encompassing.

But as I lay here on the eve of this somewhat muted Mother’s Day, I thought I would write to my boys. Something for them to read (and to look back on) during a time when they lived in a world that was uncertain and precarious.

To my Nico and Maximo:

  • I can never fully express how much I love you both in words. Like, I literally can’t find the right words to express how much I absolutely love the two of you…and I’m a writer…talk about ironic.
  • I am a very strong woman, but I cry pretty easily so be prepared. You may take turns consoling me and bringing me tissues. Oh, and this will also probably mean you’ll end up marrying someone who is equally as emotional as your mother because that seems to be how things work out so…you’re welcome.
  • You are a joy and a pain in my life. When you are happy, I am over-the-moon ecstatically happy for you, but when you are sad it is the most heart-wrenching, hopeless feeling ever because all I want to do is make it better for you and I know that won’t always be possible.
  • I have to will myself not to kiss and hug and squeeze you over and over. I am very affectionate so you will need to humor me when I ask for a kiss or I expect a hug every single time I see you. I promise, I will never (intentionally) embarrass you with my affection as you get older.
  • You will always be my “babies.” I will try very hard to not coddle you and make sure to give you space, but I can’t promise I won’t use the terms of endearment I have had for you since you were born. Hey listen, your grandpa still calls me “pussycat” and I’m a grown woman for Pete’s sake. Parents adore their kids…what can I tell ya?
  • I will lose my patience with you and it probably won’t be pretty….ask your father. But, if I do then you must have done something pretty stupid or pretty bad because I have a lot of patience. So, word to the wise: Don’t make me lose my patience. You don’t want to see the “evil eyes.” Instead, think before you speak or act.
  • You will experience some challenges in life. Everyone does. I have experienced plenty so I will be one of the best people to come to when you need a shoulder to lean on or cry on. Yes, I said cry on. It will be ok for you to cry. Men are allowed to cry. I am a very good listener and I promise I won’t try to fix the problem if you don’t want me to. I will simply listen. Just please come to me every once in awhile.
  • I stare at you both all the time. I am constantly taking mental photographs of you in my mind because time goes by so quickly and we are never promised a tomorrow. I know that’s pretty morbid, but it’s true. I learned that the hard way with your grandma’s passing, but I adored your grandma so I watched her a lot and have many mental photographs of her to keep me comfort. I hope you will do the same with me.
  • You two are going to be tight for life. I can feel it. Yes, you will have disagreements, but I know you will always look out for each other. I am trying to instill that in you both now. I will always encourage you two to be close so don’t get annoyed if you share a room for an unusually long time. Just kidding…maybe.
  • I have been blessed with boys who symbolize the love I have for their father and who will forever know me as their mother. I love you both with an unconditional love. A love that you can always count on to carry you through anything. Thank you for making me a mom.

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!