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…

The Power of Friendship

When Nico was diagnosed with Autism, one of my first fears was whether or not he would have friends. I had seen my fair share of children and young adults with Autism as an educator and it broke my heart each time when I would walk into the lunch room and see them eating alone or observe them walking the halls by themselves. I’m sure that some of those students were perfectly content sitting alone. They may have even preferred it and I would tell myself that so as to not needlessly bombard them with unnecessary (and probably embarrassing) attention. But, I couldn’t help but wonder what life had in store for these kids. Would they always traverse through life isolated and separate when they had so much to offer in friendship and love?

Friendship is such a vital part of our lives. None of us can survive this life without at least one friend. Like me, Nico has been beyond blessed with so much family and his first and best friends have been his cousins. My first friends were also my cousins and they truly helped define the best parts of my childhood. To this day, they are on speed text and the first ones with whom I share any milestone or challenge. As I journeyed down my educational path, I learned that best friends weren’t just reserved for blood relatives and the friendships I built during those stages of my life helped me through all of life’s ups and downs. Now, many of those friendships I held dear have migrated to social media as life has changed and shifted, but they remain close to my heart because of the impact they had on me in those moments.

Nico is just beginning his journey into friendship building and for the first few years after his diagnosis I truly believed this journey was going to be fleeting because of his special needs and lack of language. The only comfort I found was that his family was where he found friendship and it would always be unconditional. They would always accept him for who he was. Then when we moved from Chicago to Texas I was stricken with fear all over again because we were leaving the only friends Nico knew. I was scared for myself as well because I, too, was going to have to venture out and find a whole new support system and in a whole new state, mind you. Our family had always been our lifeline and our major friend base.

Aside from our familial friendships, my husband and I found ourselves struggling to keep up our other friendships after Nico was diagnosed because we felt like we could not leave our home, with or without Nico. We always looked forward to the prospect of raising our children alongside our friends’ children, but our everyday normal ended up looking very different than that of our friends and we were limited to what we could do. We reached a place in our friendships where apologizing became the norm because we may have RSVP’d yes to a party, but if Nico was struggling that morning or on the verge of a meltdown we knew he would not survive a party. If we had finally mustered up enough energy to go out to dinner or meet up with friends it never failed that Nico would have a treacherous day and it would send us into a tailspin of stress and exhaustion. This would then cause us to have to cancel plans because all we wanted to do was sleep (and secretly cry in the bathroom) instead.

You learn the true meaning of unconditional friendship when you become a parent, especially a special needs parent. The life you lived pre-kids ceases to exist and any friendships that can survive the “early-parenting sabbatical” are the true and lasting ones; they pick up right where they left off (and with lots of libations)! These friendships are golden because you know you can always count on them to be there no matter what. These friendships are empathetic, forgiving, and fiercely overprotective.

Fast forward two and a half years later to our life in Texas and not only have my husband and I found an amazing community of other Autism families, but these families have become our closest friends. We have built unconditional friendships with these parents. We all “get it” when one of our kids is having a meltdown and a party cancellation must follow. We’re there for each other to celebrate the milestones and there to hold each other for the regressions and plateaus. There is never a worry about anyone showing up to a birthday party because we always show up for each other. I have been forever grateful for the friendships I have forged with these families; it makes me feel so much less alone. Being a special needs parent can be very lonely and isolating if you don’t find others that can relate to what you are going through on the daily.

If you are in need of support, turn to social media. There are so many support groups for Autism. You would be surprised at how powerful a friendship can be even if it’s a virtual one. These sites will provide wonderful supports and resources, as well as reassure you that you are not alone:

1. National Autism Association

2. Autism Speaks

4. MyAutism Team

Having these new friendships has really helped because we have now transitioned into a new world of friendship building with Nico as he has entered elementary school. I was beyond petrified at the beginning of the year that he would stick out like a sore thumb and possibly make zero friends. My vision of having a cool school mom crew to hang out with on the weekends had long dissipated and all I was concerned about was whether or not Nico would find a friend who thought he was as awesome, funny, and sweet as his mom and dad did.

Well, Nico hasn’t just forged one friendship in his Kindergarten class…he has forged several! The students in Nico’s class have demonstrated the absolutely indelible power of friendship. Nico may not be able to tell me their names or share with me all that they did together in school that day, but I know Nico loves being at school because he wakes up happy everyday, excited to go. I have to believe it’s because he can’t wait to see his friends. And, these children are showing Nico what unconditional friendship looks like daily because Nico is not always funny and sweet. Since Nico is still minimally verbal, there are days where he struggles and wants to hit or throw things out of frustration. Sometimes it is directed at his friends, not because he is being malicious, but because he doesn’t have the words to express his disappointment or disapproval. Most children might get upset if another child became physical with them in any sort of way, but not Nico’s friends. They find ways to empathize with him and know that if Nico is displaying these behaviors he is upset about something. They work to find out what is wrong and how they can help.

Did I mention they are six years old??

This first elementary school year for Nico has brought its fair share of triumphs and challenges. I do worry about Nico falling behind academically because of his special needs, but the one saving grace has truly been the friends he has made. I don’t know if Nico will keep all of these friendships throughout his elementary school years. I pray and hope he will retain many and even make some new ones along the way. But what I do know is this…these friendships Nico has built have restored my faith in the power of unconditional friendship and that it isn’t just reserved for adults. It’s alive and thriving in Kindergarten!

Empathy Is Transformational!

Raising a child with Autism requires an immense amount of patience, strength, infinite hope, and an unwavering commitment to spread Autism awareness wherever you go. I have been embodying all of this for quite some time now because I have wanted Nico to know that although his life may be a bit different and sometimes a real struggle, he has someone who is fighting the fight, walking the walk, and feeling all the feels right alongside him. I owe him that and a lot more. Empathizing with my son is like second nature for me. Empathy is something I was taught from an early age and it is something that is truly imprinted on me. It has done me a world of good, fostered amazing friendships, and taught me invaluable lessons.

But, what does it look like and how is it cultivated? Are we born with it? Does everyone naturally know how to empathize? Sadly, no. I have learned that the hard way while being on this journey with my son through the world of Autism, but I am here to tell you that empathy is ALIVE and THRIVING in my son’s Kindergarten classroom! Yes! Children as young as six years old have taken my son under their wings and embraced him for who he is.

While preparing to return to work this past week, after being off with my newborn for over 3 months, I was suffocating under the weight of immense anxiety. However, I was also overcome by immense acts of empathy. Not just for me…I’ll talk about that in a second…but for my son. During Nico’s midterm parent-teacher conference, I learned that the students in his class are excelling in some pretty amazing social-emotional skill sets. They actually “understand” my son and they know that he needs breaks, and that he needs to sit in his special chair while everyone else sits on the floor. When they go outside for recess they cheer for Nico as he comes down the slide because Nico stands at the bottom and cheers for each of them every single time. At lunch, someone is there to help Nico unwrap his straw if he is struggling so that he doesn’t get himself worked up out of frustration. They know he doesn’t have the words to ask for help so they watch for the signs. And when the teacher asks for the class to be silent, they know Nico gets a pass because sometimes “Nico feels better when he is able to talk out loud (scripts).”

When his teacher told me that…when she said that these amazing little angels will correct one another if one dares utter a word about Nico talking…I cried.

These children empathize with Nico’s need to script at times. They may not know why, but they know that that is a part of who Nico is and they don’t even question it. What amazing skill sets to be cultivated so early in life. Nico’s teacher said she has never had a class so in tune with another child’s special needs.

And if that wasn’t enough to make me send gift baskets as a thank you to every one of these students’ parents, I then learned that Nico has a FRIEND! A little girl who he has gravitated to and has genuine interactions with everyday. Nico plays with her, loves to sit next to her, hugs her when he needs some extra support and this little miracle worker understands his needs. To be so young and so intuitive and so empathetic. She tells the teachers when Nico is struggling or when he needs a break. She expresses her concern for him when he is having a tough day or isn’t having “nice hands.”

No wonder my child wakes up every morning with a smile on his face and walks into school with a pep in his step! He knows he belongs!

My ultimate hope for Nico has always been that he would find someone in this world that would accept him for who he is and what he brings to this world. That he could make friends and enjoy another person’s company. I didn’t think it was going to happen so soon, especially with his limited language, but here he is with a special friend who genuinely enjoys spending time with him, learning with and from him. What more could an Autism parent ask for?!

This is a direct result of EMPATHY.

Empathy is transforming Nico’s life and it’s transforming mine too. Being a working mom is tough. Period. But then when you add in weekly overnight travel, a newborn, and a special needs child to the mix it adds a thick layer of guilt, stress, and a secret desire to gamble daily so winning the lottery can keep you at home.

But in preparation for my return to work this week, I have had so many incredible women in my life empathizing with me. Sending me encouraging texts, calling to cheer me on, offering to support me in any way they can so my transition back to work is a seamless one. These acts of empathy made this day infinitely easier.

And what I continue to realize about empathy is that it is so easy to show, it costs nothing, and yet its effects are invaluable and can be felt for miles. Our world is in dire need of empathy right now. We need more people to be kind to one another. Thankfully, Nico’s classmates have set in motion something so incredibly powerful…and they are CHILDREN! Imagine all that they are going to contribute to this world because they have learned empathy at such a young age. It’s one thing to empathize with those who you know and love, but to bestow it upon others simply because it is the right thing to do illustrates the heart of the human condition.

Eventually, Nico is going to start communicating more and when that day comes I hope he uses his voice to advocate for those who need empathy. I want him to know how important it will be to pay forward all the acts of empathy and kindness that were shown to him.

I am beyond thankful and grateful to everyone who empathized with Nico and me this week. These acts of empathy are transforming our lives more than you know and giving this Autism mama a real boost of infinite hope for Nico’s future.

Tonight I raise my glass of wine to all you working mothers out there! We’re surviving and thriving!