Preparing for Battle

I read an article awhile back that chronicled a research study regarding Autism moms and their levels of stress. The study found that Autism moms experience chronic stress that is comparable to that of combat soldiers, as well as frequent fatigue and work disruptions. When I read that I was stopped dead in my tracks because it could not have been more true for my circumstances at that time. Nico was almost 3 years old at the time and we had only been living with his diagnosis for little under a year. My husband and I were at our wits end with his constant meltdowns. We couldn’t leave our house with him without fear that he would break down at a moment’s notice no matter where we were–the mall, a family party, the grocery store–so we basically imprisoned ourselves at home.

I didn’t want to believe that this could be true considering how vastly different an actual combat-like environment was from my life, but yet here it was…this legit research study comparing my life raising a child with Autism to that of a soldier’s in combat. It does sound a bit melodramatic, I know, but I promise you the research backed it up.

In a way, I felt oddly validated. My stress levels are typically off the charts. The amazing thing is we, Autism parents, learn to manage our levels of stress quite well. We learn to live with it. We compartmentalize it and only show it in the privacy of our own home when no one is looking.

I had a friend ask me one day—and she was genuinely curious and just desperately trying to understand—what it was like to be “in my shoes.” So I took her through a “day in the life of being Nico’s mom.” By the end, I wasn’t sure if she was going to burst out crying or laughing because I beat her to the punch with both of those emotions. Just talking about all the things that go into making sure that my sweet boy can have a successful, peaceful, predictable, progressive day tires me out and blows my mind simultaneously because I just cannot believe that I actually have to do all of that for just one child.

So, when I saw this article resurface in a fellow Autism Mom’s blog this week I could not help, but reflect on how true it still is for me today. Case in point, I am a wreck currently. We have just lost the matriarch of my husband’s family. Our dear, sweet Abuelita. Nico’s great-grandmother. And, we have to travel to Chicago from Texas for the funeral. Ok…now this wouldn’t be fun for any parent who had to travel with a soon-to-be 1 year old and 7 year old in the middle of a pandemic when you’re emotionally raw over the loss of a loved one, but now add on the fact that this 7 year old has Autism, limited communication skills, loves reading books on his iPad via YouTube Kids, and ONLY eats goldfish crackers and V8 Fusion Peach Mango juice. Why do the last things even matter? Oh, you’ll see.

Ok, and now just think about all the crap that you have to lug with you when you have a baby in tow—stroller, car seat, pack and play, baby monitor, noisemaker, diaper bag filled to the brim with diapers, wipes, bottles of formula, baby food, toys, change of clothes—and I haven’t even added in the suitcases, garment bag and carry-ons and a box fan—yes, I literally said box fan—because we cannot sleep without the constant hum of a fan. Now, obviously we won’t bring the fan on the plane with us, but the point is…who do you think created this never-ending list of items that had to be packed and then made sure all listed items made it into the car? The physical lifting honors do go to my hubby!

Are you exhausted yet?

It is Nico though who has always been the trickiest to travel with because he requires so much. Not only do we have to make sure we bring his main sources of nourishment wherever we go because he will not eat ANYTHING ELSE, but these items require a serious amount of time spent on them. We have to make sure that we execute a succinct plan to get Nico’s juice through security checkpoints since we have yet to find an airport that sells this specific juice. We have to time it just right so that he doesn’t drink his last juice serving too early because then we won’t have enough for when we get to the airport and through security. But, we can’t bring too much juice through security because they may not let us bring it all.

Then there is the whole issue with what will keep Nico occupied in the airport and on the plane. We have to make sure he has both iPads fully charged. I have to have movies downloaded for offline use just in case there is no Wi-Fi or the Wi-Fi is lagging and he can’t watch YouTube Kids. However, Nico has to “be in the mood” to watch a movie. If he isn’t in the mood and we don’t have WiFi on the plane or in the airport then we run the serious risk of a meltdown which could last for minutes or hours. I have to pack his books and little knickknacks just in case he actually wants to play with them on the plane, but I never know because he won’t tell me to pack anything and, frankly, he hates the idea of me taking any of his books or toys from the house so I have to secretly pack everything up in his bag without him seeing me which can be tough since he basically follows me everywhere I go in our home.

And, to ensure that he can hopefully fall asleep, I have to lather him up with lotion that is mixed with a special essential oil blend that helps keep him relaxed and can put him to sleep, BUT I can’t put it on too early because if I do he may fall asleep before we get on the plane and then we’re screwed because if Nico catches even just a wee bit of shut-eye and then is woken up abruptly he will not fall back asleep no matter how soaked he is in essential oils and lotion. Which, in turn, makes a 2.5 hour plane ride feel like an eternity for me because I don’t know what Nico will be capable of if he gets restless with nowhere to go and nothing to do or watch (if the WiFi is slow or nonexistent).

I’m sure, if you are not already hyperventilating or sweating profusely after reading all this, you can probably start to better understand why Autism parents, especially moms because let’s face it….we just take on a lot more, have insanely high stress levels, frequent fatigue, and are one step away from being issued honorary military status.

Like, right now…it’s 11:30pm and I am laying in a hotel room next to the Austin airport. I couldn’t fathom getting my boys up any earlier tomorrow morning to drive from our home an hour south for the 9am departure so that I had the best chance of getting them both to fall asleep on the plane for at least half of the duration of the flight.

You see how it’s a constant merry-go-round of Plans A-Z, and escape routes, and mental jigsaw puzzles to ensure that Nico does not face anymore challenges than he already does. Now some may say, this is just too much. Nico will have to learn and adjust. I always empathize with people when they say that to me because they just don’t understand and they don’t have to, which is totally ok. I’m thankful that they don’t. This is hard. I love my child so much it can’t even be put into words, but living with his Autism is sometimes more than I can bear.

And until you walk in an Autism mom’s shoes, you may not truly believe that our stress is comparable to that of combat soldiers’ levels. But, I promised myself that when I started sharing my journey as an Autism mom that I would share all sides. The good, the not-so-good, and the downright exhausting.

I truly don’t know how tomorrow will go when we wake up at 6am to get ready for our flight. This will be the first time we fly with our baby boy, Maximo and that is adding a whole other level of stress for me. Nico, ironically, is the one I am less worried about, but I am still fully prepared mentally, emotionally, and physically to have to manage a difficult day tomorrow because of Nico.

That’s what it’s like being an Autism parent. Preparing for the worst-case scenario, praying for the best-case scenario, and hoping it falls somewhere in the middle so you can say it was a successful day.

I’m lucky though, I have a true partner-in-combat and that’s my husband. He is there to help with the heavy lifting, literally and figuratively. So, no matter what, I know I share the battlefield with someone who will always have my back.

And, if all goes to hell early, a mimosa makes everything better! Thank goodness for airport bars! Chicago and fam, here we come…say a prayer.

In His Way

I always wondered what it was going to be like when I had to explain death to Nico and if he would be able to connect to what I was telling him. Most often than not, Nico lives in his own world with his own thoughts and his own unique perspectives. I have learned to live parallel with him, but I never lose hope that he will reach out and and pull me into his world so I can feel a bit more connected to him in an authentic way.

He knew something was wrong when he saw us crying and he knew it’s wasn’t ok when it came from both his mom and his dad. However, Nico did not show sympathy or concern in the way a neurotypical child might. Instead, he sat on the couch and started to script just a bit louder and more erratically at times. That’s how I knew he was aware there was a problem and it was not good.

Nico has always been in tune with his father’s and my emotions, especially mine. He can pick up on changes in tone of voice or nonverbal cues and will immediately start to overcompensate in his behaviors if he thinks it will help make a situation better. It never ceases to amaze me how Nico can be so aloof to so much when he is being practically spoon-fed the information; yet, be so in tune with things that are almost meant to be invisible.

This is the allure of Autism. I tell ya…

I knew I had to talk to him because my husband and I were pretty emotional and it was going to be a very long evening of constant calls with endless amounts of tears. So, I sat down next to him and I pulled up a picture of his “Abuelita” and I asked him who the woman was in the picture. Of course, I got no response. This is typical whenever I try to have a straightforward conversation with Nico.

I asked him again and this time he answered with an echolalic response (repeated my question verbatim), “Who is this?” so I knew this was not going to be an easy conversation. When Nico interacts with me in this manner it is not only disheartening, but also frustrating because it leads me to believe that he cannot comprehend anything I am saying to him. And it’s crazy for me to think this way because my kid is wicked smart, has a photographic memory, and can literally read anything you put in front of him!

So, how can he not answer a simple “who” question?

I felt myself starting to tear up and I knew I had to stay calm so I simply told him that the woman in the picture with him was his Abuelita and that’s when he repeated “Abuelita” to me. I acknowledged him and said “Yes! That’s her and she loved you very much.”

Nico knows what love is, but I try to show him in all sorts of ways how it looks and feels. So, I hugged him tight and said, “Abuelita loved hugging you and always wanted to give you a big hug when she saw you.”

He allowed the hug, but I knew he was missing the connection. All he did was turn back to his iPad and continue to zone in on the new book he discovered on YouTube this past weekend.

Man, this was tough. I wanted to shake him and just say, “Your Abuelita is gone and she loved you so much and we are all sad! You should be sad too! You need to know these things Nico so you can share in this grief with us!”

I felt so mad at that moment that Nico had Autism. I felt like his Autism was stealing away his ability to mourn with his father and me properly and all I wanted in that moment was for my son to feel grief and share in our grief. I wanted to just get up and walk away from him, but I knew that would not be fair to Nico.

Nico had the right to know his Great-Grandmother died. He had the right to know that when someone whom we love passes away it makes us very sad. And, I also wanted him to know that his Abuelita was now in Heaven with his Abuelito and he had one more angel looking over him now. I pointed up to the ceiling and explained that she now lived above us and would always watch over us and keep us safe. He looked at me and then looked up at the ceiling and said “angel.”

He then looked me straight in my eyes, wiped my tears and said, “It’s ok. It’s ok.” And that was it.

He went back to his iPad and for the rest of the evening he lived parallel to us as we continued to grieve and process the news of our loved one’s passing. My husband and I didn’t press him for more of a response to the news nor did we change up anything about his evening routine.

Whether or not Nico has fully grasped the gravity of this family hardship or understands what it truly means to lose someone is left to be seen. I guess we will soon find out over these next few days and weeks.

But, I know that he is processing it in his own way.

It may not be the way I want him to experience it or process it which makes me feel a bit bitter, but I think that that’s just my rage against Autism presenting itself. All I know is that I want Nico to know and feel how much his Abuelita loved him because if he did, grief might not be such a foreign emotion for him.

I know Nico has deep compassion and empathy for others; I see glimpses of it every time he cups my face gently when sensing my anxiousness or when he brings me back to a place of hope with a short, but perfectly pronounced, “give me a hug.” I just hope that this journey we’re about to go on as a family opens him up to us a bit more because we are certainly going to need it, especially his father.

I’m going to give Nico the benefit of the doubt because I have seen him do tremendous things under challenging circumstances before. For Nico, it’s always been on his own time. Showing up for his family in their most dire time of need is something I know my sweet boy will most certainly do…we just may have to embrace that it will be in his own way. But, that’s what will make it infinitely more special and memorable for all of us.

Rest In Peace, Abuelita. We love you so much. Until we meet again….❤️

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!