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.
One thought on “Preparing for Battle”
I hear you Katie. Winston Churchill was emotional, so is the judge of The Great British Pottery Throw Down. Emotional intelligence is amazing and brings, meaning, connection and release. And yes I hear you, lots of grief. So interesting about the sleep lotion and having passionate fixations on seemingly ordinary things. I am very interested to share thid with our friend who had basically adopted his ex-girlfriend’s autistic son. He has become the center of our friend’s world. He coached him to pass his SATS. He takes him to My Little Pony conventions – a fav of many with autism and lots of others and is even heading towards putting him through college. Can you please post the link to the Autism article you mention?