For All the Firsts

I have been very antsy as of late. Christmas is less than a week away and although I have been done with my shopping for awhile now, I am still unsettled. Normally, in the past, it was because I knew that Christmas Day wouldn’t be as magical for Nico as it was for other children, or even for my husband and me for that matter. Nico never truly understood that Santa brought these amazing gifts for him and laid them under the tree, pristinely wrapped with such care, and so waking up on this day lost a bit of its luster once Nico began his journey through the world of Autism.

He didn’t pay attention to the presents under the tree just waiting for him, nor would he rush to open all of his other gifts when everyone was doling them out at our family gatherings. He was content to just play in a corner somewhere with his little knickknacks in his own world. Meanwhile, his father and I were holding back tears and silently envying every other family whose children were ever present in these special Christmas moments with each other. It was these early Christmases after Nico’s diagnosis that made me miss my mom so deeply….all over again. I clung to this idea for so long that if maybe she was still here with us that she would have the magic touch and could transform Nico’s interest for Christmas into something magical like she always was able to do for her own children.

But, fast forward to today and Nico has grown tremendously. He understands who Santa is and that he is a special man that helps bring joy during Christmas. He also has begun to understand that the gifts under the tree have something to do with him. In these last two years, Nico has been more present with us during Christmas. He has opened gifts with eager anticipation and cheered when he or anyone around him has received a gift that was really wanted. Choosing the right gifts for Nico is a totally different story, but when it happens it’s like your life has been made because his eyes just explode with excitement and he tends to use so much appropriate language in those moments.

So, I know that the gifts he will receive this year from Santa will surely evoke the same giddy exhilaration, but I am now dealing with all new feelings of angst and discontent. And, I have been wracking my brain to determine why I can’t shake these feelings other than for the obvious reason…this awful pandemic has stripped so much of the typical joy and festivity from the holiday season. I have come to terms with the fact that there will be no large family gatherings and we won’t be opening gifts together with our family. I won’t be making a lavish Christmas dinner in my own home since we are still residing in a rental while ours is on the mend. I have reconciled with all of this, but I think what is truly affecting me this year are overwhelming feelings of sympathy, empathy and heartache.

This year has put my family through the ringer and has definitely had me longing for my mother in a way I haven’t felt in awhile, that’s for sure. But, it has also opened my eyes and heart to the thousands upon thousands of others who will be having their first Christmases without loved ones. Loved ones stolen away by this merciless virus. My newsfeed is taken over by countless stories of unimaginable loss everyday and it isn’t letting up. The deep heartache these poor, grieving families must be feeling coupled with knowing that they may not even be able to gather with their other family members for fear of compounding this loss with even more senseless loss.

The first Christmas, the first New Year’s Day, the first everything. I know these feelings of loss and longing all too well so I am here to let you know that if you are experiencing the first of many “firsts” without a parent, grandparent, child, spouse, aunt, uncle, cousin, friend, or significant other…your loss is not in vain.

Your loss is reverberating across this country through every doctor and nurse who couldn’t save their patients or allow for family to say their goodbyes face-to-face.

Your loss is being felt every time someone turns on the television and is faced with the growing number of cases and increasing mortality rate.

Your loss is being felt every time someone with pure ignorance in their heart decides to walk around carelessly without a mask.

Your loss is being felt by anyone and everyone who has lost loved ones this year or in years past and longs for their presence, touch, or voice just one more time, especially around the holidays.

Everything about 2020 has brought about so much angst, frustration, anger, disappointment, and heartache, but if there is one thing I would ask you to cling to it’s this: You are NOT alone.

You truly are not alone in what you are experiencing and I don’t think there have been more than a few times in our history where, as a nation…hell, as a world, we could say just that and really mean it. So, if you can find it in yourself to pull any kind of silver lining out of your grief this Christmas let it be this universal sense of sympathy and empathy that is absolutely rippling across the world right now.

My mom has been gone for 23 years and, although I miss her everyday, time does help with mending broken hearts and finding a sense of normalcy again. It doesn’t come without a lot of tears, a need for constant embrace, an ear to listen, and words of encouragement though.

And, since this year has been so unconventional and is causing me to think of how much I wish my mother was here, I have even thought about doing something radical like jumping in my car with my boys, big and little, and just traveling to a place where we can forget all about the sorrows and struggles we’ve faced this year. We can enjoy a complete change of scenery—since nothing about this Christmas fits the norm anyway—and just recharge our mental and emotional batteries, make new, fun memories, and ring in the new year on a high note.

I encourage you to consider doing the same thing! Be bold, be brave, and create a journey of healing for yourself that will allow you to grieve, but also allow you to reflect, remember, and make new memories that can be used to help these “firsts” sting a little less.

Remember…grief has no expiration date. Feel all your feelings, but don’t feel afraid or guilty to laugh or smile or seek a bit of merriment right now. Don’t let this pandemic steal everything from you.

So, please accept this post as a call to action, a shoulder to cry on, a warm embrace, a listening ear, or the encouraging words you may need right now to get you through the next minute, hour, day, week, or month as you grieve these “firsts.”

Merry Christmas, Happy Hanukkah, Happy Kwanzaa, and have a very Happy New Year as we kick 2020 the hell out of here and ring in 2021 with renewed hope! And, may your loved ones Rest In Peace.

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.