Standing Out

Nico starts second grade this week. He will be back in-person at his elementary school after being a virtual learner for the last year and a half and I feel like we’re prepping for his Kindergarten year all over again. All of his first grade experiences were remote. I didn’t want Nico to connect school with what COVID had transformed it into during his first grade year. He may not have ever wanted to go back. For the first part of last year there was no recess, no lunchroom access, no rotations, and no real contact with classmates. These are all Nico’s most favorite things when it comes to school and I knew if he constantly heard “no” to every one of them it would have had a lasting impression. So instead, we trudged through virtual learning with the help of his miracle workers aka ABA therapy team and somehow survived the year.

I tried to fill his summer with a lot of fun and engagement since the school year was so trying for him. Virtual learning had taken a toll on me as well so I was in desperate need of some R&R. We went on an amazing beach vacation with our family, which included Nico’s cousins who know him like no one else and accept him for who he is. I always feel more at ease when we surround ourselves with others who “get it.” Who understand Nico and understand his Autism. It’s easier and less anxiety-inducing. And, as good fortune would have it, my husband and I connected with another Autism family on our trip. For once in our lives we had people outside of our family/friend circle to talk to who “got it.”

It was Nico’s cousin who recognized the behaviors that the little boy was displaying while we were all hanging in the pool one day and knew he “was like Nico.” She mentioned it to my husband and me and I couldn’t help but be proud of her because she was so empathetic towards this little boy. She didn’t just sit and stare at him or shy away from him like others can do when encountering an individual with Autism. Instead, she encouraged us to connect with his parents. I will forever be so thankful to her for urging us because once we met this lovely family and began sharing our stories of our sons it was like we were speaking our own language. I felt less alone and more empowered and I haven’t felt that way in a long time. We exchanged numbers and vowed to stay connected. It’s important to stay connected. It made me long for that type of connection with other families closer to home.

But, what I found this summer with that one family is what I hope for my son. It just takes one person to make you feel less alone…to feel included.

When Nico walks into his classroom this week, my hope is that his classmates will see past his stimming and scripting, will be open to his unique yet sometimes disruptive behaviors, and will give him more than one chance to show them that he’s a pretty cool, fun-loving kid even though he may not be able to keep up a conversation with them when they try talking to him.

And, I hope that Nico walks into his classroom with an excited disposition knowing he’s going to have a great time in second grade. I hope he leaves the worrying to me. I hope he is oblivious to what I am anxious and worried about and just focuses on whatever makes him happy in that moment (which will probably be his teacher’s amazing book corner). I feel like this is how he lives his life for the most part anyway. He is blissfully unaware of social acceptance; he has anxiety about things that HE deems important and that’s more than enough for him.

I read this incredible story the other day and I couldn’t help but be overcome with emotion by the end; that one person can make all the difference in the world. How proud his mother must be to have a son so empathetic and kind-hearted. I pray Nico’s spark attracts a good friend like that little boy. Someone who will stand next to my son and accept him for who he is. All kids deserve that. I want this year to be the start of many great years filled with friendships and acceptance and inclusion. I want to know that when I host birthday parties for Nico they will be filled with not just his family, but with friends he has made at school. And, I can only hope that he will be invited to some himself.

I tend to see social media posts floating around this time of year asking people to “choose kind” and I can’t help but think that they must’ve been initiated by parents just like me who are worried about their children being accepted and treated with respect. It’s a concern not just reserved for Autism parents. So today, I join the countless number of parents who, as they send their kids off to begin another school year, hope and pray that it’s a positive, uplifting and inclusive one. The world is filled with way too much negative energy and superficiality; it’s so tough to be a kid today. We have to start helping our children change this harmful narrative that can so easily penetrate their school hallways. With that said, my biggest hope for our students this year is this:

If you want to stand out in school, be the one who stands out by standing UP for and SIDE by SIDE with someone in need.

And to my Nico…we’ll take each day as it comes like we always do. Just do your best, be your best, and see the best in everyone and everything. Mom and Dad love you very much! Good luck!

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.

When Family Shows Up

This last month has been filled with some really amazing highs and some incredible lows. Such is life, I suppose, but when you’re trying to wade through the tumultuousness of a nationwide pandemic–while raising a child with Autism in the midst of it–the highs just don’t ring as high and the lows leave a more somber, stifling effect. That’s when it’s so absolutely invaluable when family shows up.

I knew celebrating Max’s 1st birthday was not going to be as grand as I always envisioned it to be thanks to COVID, but I was still going to find a way to create memories with him to help document this milestone birthday. I was also struggling a bit with the fact that we were going to have to celebrate it in our temporary house since our beautiful home was in the midst of a lengthy journey of restoration from a summer water damage disaster which upended our lives in more ways than one, especially Nico’s.

And if that wasn’t enough, we were also still reeling from the recent loss of my husband’s grandma/the boys’ sweet Abuelita so we were now prepared for Max’s birthday to be filled with bittersweet emotions. Needless to say, the lows were definitely outpacing the highs. Max’s 1st Birthday had to be the high of all highs so October could avoid being another month to succumb to a case of the “2020s.”

As a result of us being out of our own home for over four months now, Nico has had to adjust to so many new environments and that is such a huge feat for him. Plus, he has really struggled in this new virtual first grade school year as he has traversed through remote learning. There is no sugar coating that. It has been less than ideal and there have been days where I have just cried at the lack of progress I feel he is making because he is not having a typical school year like he did last year. After having such a tremendously successful Kinder year in an inclusion classroom (up until March) we were so hopeful for what elementary school would be like for him. But, COVID has robbed so much from Nico and I have no idea what to expect anymore.

I miss the social interactions Nico had with his classmates. He is already limited to who he actually interacts with typically due to his social-emotional challenges and lack of communication so going to basically zero social interactions with kids his own age (outside of the few children he interacts with at his therapy center) really makes me nervous. His classmates this year truly can’t get to know who Nico is and how engaging he can be. They only get glimpses of him through a sterile Zoom meeting environment. And, since most of those interactions show him stimming, scripting, or having a parent assist him with answering, his classmates are only seeing ONE side of Nico. This has now lead to the curious looks and the lack of “Hi, Nico” from his classmates while other kids in his class exchange pleasantries each morning with each other.

I know Nico may not notice or be aware of it (thankfully), but it resonates loudly and clearly with me and breaks my heart a little more each day. I can’t help but feel like the lows have been taking the lead in our home. However, I try to keep things upbeat in our house with lots of song and dance and hugs and kisses. There is never a lack of affection and although many people believe that children and adults with Autism do not like to be touched and do not display affection or empathy, this is a huge myth! My Nico is extremely loving and affectionate.

So, when our family showed up for Max’s birthday week it lifted our spirits and transformed our house into one of celebration and positivity on almost an existential level!

Our family drove countless hours, despite going through their own journey of grief, to make sure we could ring in Max’s 1st Birthday with a bit more pomp and circumstance like we’re used to when it comes to milestone birthdays. They know how important family is to us, especially Nico, and they showed up! It was probably the best decision for all of us because laughter and joy through tears makes everything so much better.

In those two weeks they were here with us, there was more normalcy in our lives. Nico had friends to exchange morning greetings with because his cousins are his best friends and include him in all they do. They never look at him strangely or exclude him from anything because they don’t understand him. Nor do they assume that because he doesn’t know how to initiate playful interactions with them that he doesn’t want to play with them. His cousins have always found ways to make my son feel included because they learn what Nico values and enjoys and engage him around those things. They go beyond just saying “Hi, Nico” which is what I was settling for just so that he had some sense of social interaction with others.

Inclusion like this is what I miss so much about Nico’s experiences last year in school. And, I know it is what fuels growth in all those with Autism. Nico experienced such progress and had so many positive moments because of the inclusivity that was cultivated in his classroom last year. It was nice to have some of that same inclusivity for Nico in our own home for awhile.

Having family with us made virtual learning feel a bit less tedious, our temporary home feel a bit more like our own home, and gave Nico the boost he needed to get him through a month that had us all craving some good ol’ TLC.

And, as October came to a close and Día de Los Muertos was upon us–that special day of the year where we welcome back the spirits of our lost loved ones into our home–I decided to finally take the time to display an altar. This altar would honor our family and friends who we had lost over the years. I would commit to doing it every year and then something always kept me from bringing it to fruition.

But, this year I needed to do it for my own spiritual healing. I needed to do it for my own emotional well-being too. I also felt my Nico needed a bit more family enveloping him with as much love as possible this year; this year has been a doozy for us.

It was the best way to keep family around us right now when we need them the most. With the holidays approaching, its hard to think about having to socially distance from those we need, especially when COVID is spiking again, flu season is upon us, and Election Day is just around the corner (and all that that day could incite).

Family, for me, has always been my top priority and I have a husband who mirrors those same values. And, when raising a child with special needs, you really do need family to lean on because it is HARD. To manage the pitfalls of life while staying controlled for a child who could meltdown at any moment when all you want to do is meltdown yourself…that’s HARD. This is when family shows up and takes on the meltdown, your child’s or yours, and it is life-(saving)changing.

You can be vulnerable with family and know that just like they are there on the best days, they are also there on your worst. We, special needs parents, must take care of ourselves because there are not many others who can care for our children. These are tough times and it is easy to become worn out and we don’t have the luxury of getting sick because no one can take care of our children better than we can….except maybe our family.

Make time for family right now. Especially now.

All I know is that you make time for the people that matter in your life. Despite everything, you show up. Family does this. And, I have to trust and believe that they keep showing up even if it is only in the stillness of our hearts or with a passing flutter of a butterfly’s wing. With every memory they evoke in us, family is forever.

Music Can Move Mountains

2020 has truly thrown me some curve balls and the year isn’t even over yet. I feel like once the summer came the days blurred together and I haven’t been able to catch my breath or tell one day from the next. I’m sure I’m not alone. This year seems like it will go down in infamy as the most treacherous year for all people, places, things, and animals…yep, basically every noun you can think of.

And speaking of nouns, I can’t believe we are into our fourth week of Nico’s school year and we’re all still in one piece. Nico is now a first grader and is also a 100% remote learner due to this God-awful pandemic we are living through. This is not the ideal setting for him and all summer long I was a ball of nerves thinking about how hard this was going to be for him and me. He hates talking to anyone on FaceTime so I couldn’t even imagine how he would manage working with his teachers on the daily through a computer screen. The only thing he looks forward to and understands clearly is the “Leave Meeting” button so you can see what a joy it is to work through five live Zoom lessons with him a day when he is just not into interacting with others virtually.

And if that wasn’t enough to keep me up at night, our first floor flooded, due to a water pipe bursting in our home, when we were hundreds of miles away visiting family so we ushered in Nico’s first day of the virtual school year from a hotel room and have since moved into a temporary home while ours begins the looooooong process of being rebuilt. Needless to say, Nico has been less than pleased with all of these changes and who can blame him? I’m barely hanging on myself.

I don’t think either of us has been in the best of moods for weeks. I can always tell with Nico because he gets over-emotional and weepy at the drop of a hat and will cry off and on all day. Or, he can get really frustrated and just want to throw things or become a bit aggressive with me. I feel like even I have been a roller coaster of emotions as I come to terms with being displaced from my home for several months in the middle of a pandemic during an unprecedented school year with a special needs child and 10 month old who would literally crawl back inside me if I let him.

I have been working tirelessly to stay optimistic and upbeat, but it has been extremely trying for me and I know Nico can sense my dismay and distress. Individuals with Autism are actually quite empathetic and feel emotions very deeply and Nico always knows when I am struggling or stressed or sad. And because he has picked up on my stress and discontent, I have noticed that he is struggling more.

Now, music has always been an incredible outlet for me to relieve my stress. I would often play my favorite songs on repeat growing up to help me regain my composure or release my stress and anxiety. Singing is also a favorite pastime of mine so, whenever I can, I will sing to help elevate my mood. Nico has always enjoyed music as well. From a very young age, he came alive with music. He loved when I would sing to him; it would actually help regulate him when he was getting over-stimulated so I would try and incorporate song into many of our daily activities.

As he has grown, he has become more selective with the music that keeps his attention and lightens his mood. He won’t let me sing the same songs I would sing to him when he was small anymore so I have to constantly find new ones to introduce him to. And, he has quite the eclectic musical palette too, which is kind of cool because he chooses music based on movies he loves or songs he hears that make him want to dance. He will then request these songs by telling me the name of the movie or by choosing a word or phrase from the song and repeating it over and over until I pick up on what he is saying.

He is quite my little problem-solver. He knows he has limited language so he always chooses his words strategically.

Well, today we started our fourth week of virtual learning and it was a marvelous Monday as we got in the car to head to the center, although I know neither of us was feeling quite marvelous. It’s just so hard to shake off a funk once you’re in it. But, as I drove Nico to his therapy center where he gets both his therapy and support with his virtual school day, I felt we needed something to boost our spirits so I put on the radio.

That’s when something really cool…and maybe even serendipitous happened! My car’s Bluetooth connected to my phone and the first song to play was a track from the movie, The Peanuts Movie which is a fave of Nico’s. And the song could not have had a better message for both Nico and me! It was a song by Meghan Trainor titled, “Good to Be Alive” and it always gets Nico moving and smiling. He must’ve really been needing to hear this song too because he was actually singing along with some of the lyrics. I could hardly contain my excitement when I heard him! My son, who uses very little language unless to request something or if prompted, was singing along to a song!

This was enough to catapult me out of my current funk for sure! But then, as musical fate would have it, my own anthem literally came on next without any prompting from me. Neither of these songs are in a playlist together nor did I intentionally connect my Bluetooth to play this specific song, but now we were listening to a song that I had to believe was sending me a message as well. It’s a song by Jess Glynne titled, “Hold My Hand” and it’s one I listened to nonstop the year it came out. The year was 2015 and it was the same year Nico was diagnosed with Autism. I remember playing this song over and over again and feeling so alone because I needed my Mother more than anything to just be there to “hold my hand.”

Well, here it was again, saving the day and lifting my spirits. I felt like there was almost a little bit of divine intervention happening in the car this morning as the song played, but what made it absolutely outstanding was to look in my rear view mirror and see Nico bopping his head and moving his hands to the beat so succinctly. I couldn’t help, but belt it out for him and then play it again before we got to the center so we could have just a bit more musical magic help bring us back to life.

This year has not been the best for us. It started in March with COVID and slowly inched it’s way to awful with my furlough in April and then became downright abysmal by July with our house flooding so I am just thankful we are standing upright in Week 4 of the school year. And because this year has sucked the life out of me, there were no First Day of School pics taken, no official posts to ring in this school year. I am behind on doctors’ appointments and first day of school haircuts. And, I have little over a month to put something resembling a 1st birthday party together for my precious Maximo while still keeping it COVID-friendly (talk about a contradiction in terms), but I’m giving myself a pass on having it all together this year. After all, my motto this year has been: “Welcome to the Sh$& Show! Compliments of 2020!” But, after having such an uplifting start to the day today, I feel like hopefully things will start looking up for us.

So, today was the START of our NEW school year! It may still be a bumpy one. Nico may struggle and resist, and regression may still occur to some degree, but my sweet boy will always have his music and our car rides to the center where we can “center” ourselves around the music that has become our mantra. Words are so important for both Nico and me. I love to write and Nico loves to read. And the lyrics we listened to today had a message that spoke to both of us, and that is…everything is going to be ok.

We got this!

We have each other and it’s good to be alive!

Truer words have never been spoken. I have Nico’s hand and he has mine and we are so lucky to be healthy and happy and able to wake up to another day together as a family! Here’s to this new school year for my sweet boy!

Freeze Frame

I wish I could freeze time. Right now. Just freeze it as it stands—regardless of all the chaos that is enveloping our world at the moment—because Nico is having an amazing summer.

I don’t think I have ever felt this at ease with my son in the five and a half years since his diagnosis. I had to actually stop and think back to the last time Nico had a real meltdown or bad day because I couldn’t understand why I was feeling so content lately. Normally I am so silently on-edge, waiting for something to happen. But, he has been so regulated and happy these last several weeks that I, for the first time since his diagnosis, haven’t been hyper-focused on his Autism.

No joke. No exaggeration. I have not looked at my son and thought about Autism. I have not felt anxious, overwhelmed, or hopeless in what feels like ages and it’s because Nico seems so content with life. It’s not as if he has completely stopped stimming or scripting. He hasn’t changed up his interests or diet or sensory needs in any extraordinary way; yet, I have been utterly transfixed on his lighthearted disposition.

Now, it could be 100% attributed to the fact that he has spent a majority of his summer so far with his cousins and he feels so comfortable with them. He can be himself with them. They just get him. Nico doesn’t have to say anything or do anything extra for his cousins to know what he needs or wants. They know when he needs a break. They know when he needs affection. They know when he wants something simply because they have learned to pick up on his verbal cues and nonverbal behaviors.

With a pandemic in full effect, typical summer vacation plans were squashed, but that didn’t stop Nico and his cousins from enjoying a family-imposed “Stay at home” order. They swam all day, watched movies, snacked until their tummies were busting at the seams, stayed up way too late for their own good, laughed until their insides hurt, and made these quarantined times as fun-filled for each other as possible.

And with Nico spending so much time with his family, he is using more language again. He is socializing more. He wants to be around us more. My heart is bursting because my son is engaged and present in ways that I haven’t seen for awhile. This is what we had been missing ever since schools switched to remote learning and kids weren’t in school socializing anymore.

However, if there is one moment from this summer so far that I could freeze and replay over and over again it would be the moment Nico gave genuine attention to his baby brother, Max. Normally, it’s like pulling teeth to get Nico to even acknowledge that Max exists. He knows his brother is here to stay, but he just lets Max do his thing while he does his. But, the other evening, I was rocking Max to sleep in my arms and we were both nodding off when I felt the most subtle brush past my arm. I opened my eyes and there was Nico rubbing Max’s head ever so gently. Just enough to let him know, “I see you. I love you. You mean something to me.” But, not with too much pressure that would have woken either of us up.

He sat there and rubbed Max’s head for a good minute or so and I kept ever so still with my eyes slightly ajar, watching my sweet boy give his brother love and attention…on his own terms. On his own time. I didn’t open my eyes or let him know that I saw him. I wanted Nico to have that moment for himself. That’s what he wanted. A private moment between brothers. Instead, I choked back my tears, took a mental photograph of the moment, and noted the date and time for memory’s sake.

My sweet boy continues to surprise me each and every day. There is still so much of him I have yet to discover, so when he is present in the moment with me or welcoming me into his world I have to recognize it on a grander scale.

Now, I don’t know what the remainder of summer will have in store for us when we have to say goodbye to our family. I know it will crush us, especially Nico. And, I am scared beyond words at the thought of the upcoming school year and what option is the best for him. I know the socialization and daily routine are absolutely paramount for Nico’s continual progress and growth, but not at the cost of our family’s health.

In a year with so many atrocities and so much despair, I want to carve out this one fragment of time and just hang on to it for dear life. Who knows if these moments will ever be replicated again. Autism can shift and change at any time and take Nico in a completely different direction.

But, what I do know is that Nico is happy. Nico is having fun. Nico is surrounded by his family who seem to magically evoke this incredible transformation which frees him of challenges and limitations.

So, for now, I plan on giving Nico a summer filled with as much socially distanced, quality, quarantined family fun time as possible.

Let’s just hope that this blog post will not trigger a tsunami of superstitious jinxing (which really means Nico decides to basically say, “just joking, mom…here’s an epic meltdown for ya!”) at its conclusion. Fingers crossed!

Stay safe and healthy, but remember to live, love, and laugh everyday. We’re all in this together.

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…

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.

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!

Reality Check

Today I was shaken by Autism. Nothing extraordinary happened with Nico. He didn’t have too rough of a day, but it was enough to ground me back in reality. I think I had been living a bit in my idealistic universe, which I try to live in more and more everyday, but when a day like today shows up I have to check myself.

I know Nico has Autism. It is part of who he is. But, over these last few months I have really seen major growth. Maybe it’s because he is in Kindergarten and that is a HUGE milestone for us or maybe it’s because he seems to be communicating better. Whatever it is though, I have seen him grow a bit more.

But then he interacts with neurotypical children his age and I see the stark contrast. I see how he is lagging and it rocks me to my core. For all of his amazing attributes and intelligence, to the naked eye, it may go unseen because it is not quite typical and typical is what makes sense to the majority.

He can’t find words to tell someone he isn’t ready to play something else or that he would really love for his friends and family to all just stay seated on the couch together because that is what brings him such joy. He can’t quite communicate that he would love someone to follow his lead or play with what he finds enjoyable. And because he can’t find the words….he hits. I hate that he hits although I know why he does it. He can’t communicate his frustration, disappointment, or sadness.

Just saying aloud that he hits makes me already feel judged. Makes me feel embarrassed. Kids are not supposed to hit.

It breaks my heart and that is when I slither away to the bathroom and silently cry for my son.

How unbelievably frustrating it must be to know that you want to say something and literally cannot get it out. To feel trapped within yourself. Hitting becomes his only means of communication. I don’t condone it, but I can empathize so deeply. I try not to make excuses, but I feel myself getting overprotective of Nico when it happens and I don’t always want to discipline him as much as just hug him tightly.

I look at his peers, his cousins, his friends (the few he has…thank goodness for his cousins) and I catch myself feeling envious because they are living typical lives, behaving age-appropriately, enjoying all sorts of wonderful experiences. I want that so badly for Nico.

Yes, Nico does find enjoyment in activities that others engage in. I don’t hold back on going out and trying new things with Nico, but it is a major risk each time we do it. It just takes one person to strike up a conversation which Nico cannot contribute to, one shift in activities without a slow transition, or one moment that strikes a nerve with him and a meltdown ensues. Others begin to stare. Children back away. Hitting may follow. And, I am left to grab Nico and usher him away before it becomes too much for either of us to bear.

I panicked today. Lost my breath for a second when I envisioned Nico never fully communicating. Struggling to connect to others. And then the questions came flooding in: Will he go to college? Will he be able to find and keep a job? Will he have friends ( outside of his cousins who are friends by default thank goodness)? Will he find someone to love and who will love him back? Will others avoid inviting us out because they don’t want to deal with a child with Autism? Will we ever just be able to go somewhere with me not having a pit in my stomach over the fact that it could end badly in a heartbeat?

I struggled today to hold in my tears. I became anxious and irritable. I was oversensitive if anyone wanted to correct him. I just wanted to grab him, pull him into my bedroom, close the door, and hold him forever. My isolation reflex kicks in. I want to just stay in my house and protect Nico from the outside world.

Autism got the best of me today. I grieved today over the childhood I envisioned my son having as opposed to the one he has.

I know tomorrow is a new day and I will quickly rebound, but today, amidst all of the little breakdowns and struggles, I wished Nico didn’t have Autism. I was tired of Autism today.

I wanted a different reality today.