Oil and water…an idiom I understand all too well. Growing up, my mother would say that my brother and I were like oil and water because we were always fighting. What she didn’t quite get though was that I adored my baby brother; however, he was six years younger than me and of the opposite sex so….yeah. I think of oil and water when I see finger paints or glitter or slime because both my husband and I would probably lose our minds if our boys ever asked to play with any of that. We are neurotic, OCD-grade, neat freaks and the thought of any of those creative play items in our home send chills up our spines.
Oil and water are also what come to mind when I think of Autism and me.
See, I am a classic control freak. Yes, the first step is admitting it and I did that years ago. I work very hard to keep it under control so I can actually have friends and a social life, but it still rears its ugly head more often than I’d like. It causes me to want to plan everything down to the minute, have multiple “Plan Bs,” and have a specific end goal in mind.
I am also a constant worrier. I have major anxiety. My joke has always been that I worry about how much I worry. I have learned to manage it better as an adult though. Most days, I can appear completely lucid and put together to the naked eye.
But, being an Autism parent AND an anxious, worrying, control freak makes oil and water look like a new savory macchiato from Starbucks.
Autism doesn’t play by the rules. It doesn’t follow a script. It goes buck wild at 2:30 in the morning. It has you running to the store to buy out the entire stock of V8 Fusion Peach Mango juice blend because it’s the only beverage your son will consume at this point in his life. Autism has you writing thank you notes to apple orchards that grow Honeycrisp apples because it is the only apple your son will eat and so you also beg them to produce that apple year round and make sure they will distribute it to Texas.
Autism did not ask me how I wanted to handle things when it decided to tag along in my son’s DNA backpack. It did not care that I am a “fixer” and I always work to ensure that life isn’t a struggle for those I love, especially my kids, because then it makes my life even more of a struggle and struggle isn’t a good look on me. Autism did not confer with me before it decided to throw my whole life plan, goal sheet, and playbook into the shredder because Autism has its own playbook.
Now, I don’t do well with uncertainty and spontaneity, but the journey we are on with Nico has been filled with both. I have had to truly reset my whole internal system in order to keep up because I like to have a plan.
In the beginning, when Nico was first diagnosed at age 2, I thought I wouldn’t survive the year….and it was January 5th when we got the diagnosis. I felt paralyzed. And, Nico struggled tremendously. We could not leave our house too often because he just could not handle unfamiliar environments. So, that meant foregoing birthday parties, weekend trips with friends, sporting events, play dates, and a sense of belonging. My husband and I have always been social butterflies so the idea of not being able to be around our friends and their kids because Nico might…strike that…WOULD have a full blown meltdown felt debilitating. I couldn’t plan for the future let alone the day because I had no idea if Nico would be able to handle it. I felt completely out of control and it sent my anxiety through the roof.
Fast forward five years, Nico is now 7 and a completely different child. Having four and a half years (and counting) of ABA therapy under his belt, plus occupational and speech therapies in those first 3 years of his diagnosis, Nico can manage so much better now. He is still minimally verbal; he doesn’t communicate other than to request things he needs and wants, but he has an incredibly rich vocabulary from his love of reading. He is a Kindergartner at a mainstream public school and he is thriving.
But…..I am still an anxious, worrying mess almost daily. You wanna know why?
And before I answer, I know that some of what I will point out is stuff all parents worry about, but for an Autism parent struggling with anxiety it’s magnified a bit more…
I worry that he is going to wander off one day into an unknown hall at school and won’t be able to tell anyone what classroom he is in.
I worry that he will have no idea what to do, where to run, or how to stay quiet if, Heaven forbid, an active shooter enters his school. In this day and age, I don’t dismiss any possible scenario no matter how outrageous it may seem.
I’m scared to death that he is going to traverse through life without ever being able to have a conversation when I know he is wicked smart and so funny.
I worry that he is not getting a full day’s worth of instruction in literacy, math, science, etc. because he has so many other tasks and behaviors that he has to manage. I don’t want him to fall behind any further than he already may be.
My mind races every night when I am about to leave on a work trip because I don’t want him to wake up and not see me in the morning. That could throw off his whole day and cause him to meltdown.
My heart races at the thought of him having a rough day at school, but thinking it will all be better at home–because mom is at home–just to find out that I am gone for two more days. That sinking feeling he will most certainly feel (even though his dad and grandpa are amazing and give him more than enough love). After all, he is a mama’s boy.
I worry that, because there is construction on the school roof, the noise could over sensitize him and cause him to hit his teachers and/or peers out of frustration.
I worry daily that his teachers are getting tired of managing him. They are amazing, wonderful, miracle workers who tell me all the time how much they adore Nico and are so proud of him, but I still worry that they are exhausted.
And that’s just me worrying about Nico….
If I literally listed off all I worry about in regards to my husband, father, oh and let us not forget my newest addition…my four month old son…I might stroke out.
It is an Olympic-style, mental gymnastics routine going on in my head everyday as I try to schedule work trips, make doctors’ appointments, keep track of therapy sessions, set up crockpot meals, write up grocery lists, and come up with reasons why Nico had an “off” day.
Did he not sleep well? Does something hurt him? Is he still festering over mommy scolding him for being too loud and waking his baby brother up?
And then the constant fears seep in amidst all of the above:
Will he ever freaking be able to tell me how his day was? Will he ever be able to tell me how he’s feeling? Will he ever consume more than goldfish crackers, apples, pea crisps and V8 juice? What happens when he ages out of services and is still minimally verbal? Will he live with us forever? Will his brother be ready to take over responsibility for him when his father and I no longer can?
How can I ensure I never die?
A colleague told me recently that she was very impressed with how well I had transitioned back to work after being on maternity leave for three months, especially since I have to be away from home for extended periods. I smiled and thanked her, but if she only knew that I had literally just balled my eyes out in my car stressing over whether or not my father will be able to manage both of my boys in the morning when I am gone overnight and my husband has already left for work. I am beyond grateful for my father’s help, but will it be too much for him? An infant and a child with Autism? Getting them ready and out the door by himself by 7:30 in the morning? I’m exhausted just thinking about it.
Autism has certainly turned my world upside down. It has taught me to live in the moment and not plan too far ahead. I have learned to find a silver lining in each day regardless of how trying it is. Maybe that is why my colleague was able to see that “glow” in my face when I returned to work. I am working so hard to stay positive and keep my anxiety at bay.
Autism did not make me a worrier or a control freak though. I know that I had anxiety before Autism. I would have probably been neurotic as a mom regardless of Nico’s diagnosis. But, what scares me is that Autism may continue to kick my butt and keep Xanax in my medicine cabinet for years to come. If I think about it too much I can actually feel myself gasping for air so I just try to take it one day at a time. That’s all any of us can do, right?
I have come to terms with one thing though…
Autism may be the oil and my anxiety may be the water, but Nico will always be that special elixir that emulsifies it all and makes this life of mine extraordinary because my son is extraordinary.