No One Knew it Would be this Hard

I was talking to a colleague of mine today in casual conversation and we were talking about the personal side of Autism. How with SOME disorders, you know- at least in ballpark- some of what you can expect, diagnoses can be firm and confirmed by genetic testing, blood draws, and you can even have some insight into “why”. Because THIS genetic marker says THIS or because THAT genetic marker says THAT.

How can you know how hard Autism is going to be if you don’t even know how you ended up here to begin with?

I am a left-brained, rigid with structure, needs to know in order to function, action plan making kind of person. Like to the extreme. Some may even be surprised to find out my “we need to do this and then this and then that” personality is fueled only by caffeine. So, when I thought Caleb had Autism, I tried desperately for it to be ANYTHING else.

I wanted him to be deaf and not hearing anything. That would solve his language delay and lack of awareness. I also wanted to have had CMV while pregnant, I wanted him to have a genetic syndrome, and anything else that wasn’t the “A” word. That’s not to insult people that that has happened to or to trivialize other people’s experiences. That is simply said to be transparently authentic into what this journey is like.

It is 100% not because I thought he would be “better off” having this disorder over that disorder- it was because- at 21 months old being my very first baby- I needed to know and I needed to know why. It took  awhile after my first suspicions of Autism for it to be confirmed. There was no panel to run or blood draw to send off to tell me for sure. And then there came the onslaught of how and why.  There’s nothing to definitively tell me that either. I didn’t know where we sat in terms of function or severity…….how do I make one of my infamous action plans if I don’t know what I’m up against?

I will tell you- if you’re not in that part of the journey yet- that even for the most rigid of us- “going with the flow” comes in time and in the wise words of Queen Elsa, you do finally reach a point of being able to “Let it Go.”

You acknowledge, you grieve, you accept. And you focus on what your child needs to be the most successful version of themselves day to day. And you learn- if by trial and error alone- that obsessing over how you ended up where you are doesn’t help you get where you want to be, so you learn to give zero foxes about functioning levels and prognoses and why and how and you do what you need to do to make it through the day. That doesn’t mean you don’t worry, it doesn’t mean you don’t stress, it doesn’t mean you don’t need a minute because you feel overwhelmed. It simply means you have found the beauty that exists in the chaos and know that there’s light at the end of the tunnel. Even if you need a match to guide you to it. Or a Mag Light. Or one of those massive bright orange lights that air traffic control uses. No matter- you know you’ll get there.

So no- no one knew it would be this hard. Because no one knew what they were up against. Fortunately, what we also didn’t know is how strong we were to advocate for someone who hadn’t found their voice yet, how blessed we were to be a part of someone living life unapologetically, or how much we could love another human being.

Here’s to the beautiful mess that is not knowing, mamas. May we never have it all quite figured out.


Love and Autism,