Searching for Thanks

I was always taught to be thankful for all that I had. My parents taught me the art of appreciation early and it was something that was ever present in our home. So it was no surprise that one of Nico’s first ever phrases was “thank you.” He may not have been able to say much (and still can’t), but he knew that whatever he was given he must be thankful for it.

Nico says “thank you” every day. He knows to say it every time he is assisted or given something. It may be one of the few things he can say, but it puts a smile on my face each time I hear it because he understands he has a lot to be thankful for (even if I still feel like he deserves infinitely more than I could ever give him). The hilarious thing is…he also definitely knows how to say “no thanks” whenever he is disinterested in hearing what I have to say, when I offer him any food or drink other than his staples– goldfish crackers or his favorite juice, or when he doesn’t want to do something. “Thanks” is certainly something of which my son has a firm grasp.

But, this year has really tested MY ability to be thankful. I hate to even say that because I do have so much to be thankful for and I know that; however, the hits my family has taken coupled with all that this pandemic has done to Nico’s progress has had me searching long and hard for thanks in every corner of my home and heart.

So, as I sat back and reflected on this year’s Thanksgiving aka “Thirsty Thursday” (as my cousin and I had decided to affectionately rename it in protest) and racked my brain for all of the things that I knew I should be thankful for (with my ___th glass of wine in hand) I decided to, instead, send some happiness and thanks out to those who may have also found it hard to be thankful this year as they battle a case of the “2020s.” Here you go!

Happy “Thangstgiving” …

  • to anyone who woke up on Thanksgiving and felt no sense of urgency to prep, cook, host, or be social due to it just not feeling like Thanksgiving this year. I feel you.
  • to anyone grieving the loss of loved ones, especially those who were taken way too soon by this merciless virus. I’m grieving with you.
  • to anyone who chose to socially distance instead of gather for the holiday and have faced criticism or backlash. I appreciate you.
  • to anyone who is feeling lonely and detached from everything and everyone due to this awful pandemic. I am here for you.
  • to anyone who secretly liked not having to gather up for the holiday because of being a homebody or because it’s hard to manage and causes anxiety. I know someone just like you.
  • to anyone who chose to keep Thanksgiving small and casual with just the people in your home. I commend you.
  • to anyone who is missing family and friends terribly and was hoping the holidays would finally allow for togetherness. I completely empathize with you.
  • to anyone who decided to start new holiday traditions in an effort to stay positive. I may have to follow your lead (just a few days late).
  • to anyone who said the hell with making a turkey and went rogue with their menu. I think you’re a badass.
  • to anyone who chose to gather with family and friends, but wore a mask and/or sat six feet apart. I applaud you.
  • to anyone who planned a Zoom Thanksgiving or FaceTime Feast so it felt like you were all dining as one big happy family. I think you’re awesome.
  • to anyone who is praying for this year to be over and taking it one day at a time. I have you beat..I’m taking it one hour at a time.
  • to anyone who needs a virtual hug, elbow bump, air high-five, and some extra lovin’. I am sending all of it your way.
  • to anyone who accepts that this year looks and feels different, but knows that better days are coming. I know you’re right.

I know I am not alone in my feelings of disappointment, angst, and despair when it comes to how this year has treated many of us. You can’t turn on the television without seeing the abysmal statistics and personal stories of heartache. But, better days are upon us. I can feel it. We just have to cling to everyone and everything that give us strength and hope and keep us thankful.

My boys, big and small are doing that for me. My Nico and the little triumphs he is making throughout this precarious virtual school year are what keep me upbeat. Knowing he is connecting with his baby brother more and more each day is proof that even in the midst of dire straights and endless challenges there is always something to be thankful for. This pandemic has given us the gift of time which is what my Nico lives by…his own time. And, the time I’ve had with my husband to reflect on the enormity of our struggles this year; yet, still stay focused on getting back on track and back in our (rebuilt) home. I am immensely thankful for that.

As we countdown to Christmas and the new year ahead, I hope that despair and frustration make way for resilience and renewal, which will allow for greater ease in finding things to be thankful for in the months to come. 2021 is just around the corner and I hope it ushers in health, harmony, and prosperity for all of us. It’s got a strong head start with all the glass that’s been shattered, that’s for sure. Don’t forget to wear shoes, my ladies! 👠

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.

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.