Somewhere in the Middle

Autism made me sad today. It reared its ugly head and made the day difficult for both Nico and me. Anxiety took hold of Nico today and unraveled us both.

On most days, I live just fine alongside Nico’s autism because we have come to a place in Nico’s life where we understand enough of what his looks like on a daily basis. But for some reason, I feel stuck. I don’t feel any upwards momentum.

We have moved past the early years where Nico had multiple meltdowns every day, and where we couldn’t go many places for fear Nico would break down, so that’s something to celebrate.

But I’m not sure what the future holds. Although we are in a solid place of management and building up Nico’s coping mechanisms, I feel like when Nico has a day like today I’m unsure of how to get us over this next hump.

I prepped him for two days regarding the lunch he was going to accompany me to. Told him how the day would look and how long we would be there. Being prepared and having timeframes are huge for Nico. I know this because we have been living with autism for the last 8 years and have found these strategies to be successful. Nico is a very systematic child and anything that takes him off his well-oiled and defined course can cause major anxiety for him.

He seemed fine the whole way to the restaurant and even seemed excited to be at the table. He was smiling and stimming and showing excitement in his Nico ways, which made me so proud…and at ease. I wanted this lunch to go smoothly since it was with friends and I never want to make things uncomfortable for others.

And no, my friends would NEVER bat an eye if Nico became overly anxious or upset, but I care about the mood that is set when I bring my son into situations like this. I don’t always want Nico’s autism to take center stage. I want to know that the work we have done with Nico is what will allow him to sit through a lunch at a public restaurant. And, most of the times now he is awesome.

Today was just not that kind of day. And maybe I’m just feeling tired and stuck on a plateau with our journey, but when Nico started getting worked up I got anxious, sad, mad, and overwhelmed. All internally of course because it does no good if I display anything but a calm, collected demeanor. However, the whole rest of the lunch was a blur.

From the moment Nico began to breakdown, which came in small waves until he finally did start crying loudly, I couldn’t focus. I tried so hard to keep up conversation and enjoy my meal, but all I wanted to do was remove him from the situation. Remove myself from the situation.

My friends were so understanding and did not for one minute make Nico or me feel uncomfortable, but I just couldn’t help but think about how much I dislike autism when Nico’s intense anxiety kicks in and takes hold of my sweet boy.

And the more I tried to reassure him that all was ok, that we only had so many more minutes, and that we could walk away and take a break at any time, Nico only seemed to recoil more within himself.

I hoovered my meal down and then we left after I got Nico to a place where he could walk out of the restaurant without making a scene. As we walked back to the car, I was feeling so defeated and emotional, yet relieved all at once. I wanted to just blink and be home so I could lay in bed because days like this tend to drain me now.

Maybe I’m just old or tired or both, but I feel like sometimes I don’t have the same level of stamina to manage his meltdowns like I used to. I was consumed with my thoughts until Nico reminded me that I wasn’t the only one working through something at that moment. He took my hand, leaning into me as we approached the car, and said something I will always remember:

“I’m sorry, mommy.

I’m better now.

Everything’s alright.

I love you, mommy.”

With those perfectly pronounced sentences, which were in no way prompted by anyone but Nico, I knew that his anxiety had let go of its grip on my precious boy.

I drove home with Nico asleep in the backseat and felt such a wave of emotions. I felt exhausted from having to keep it together and not want to just rush out of the restaurant at the first sign of Nico’s distress. I felt blessed to have such wonderful friends who kept our lunch going in stride for both Nico and me. I felt hopeful because Nico spoke to me unprompted and SHARED his feelings. And, I felt sad that he had to experience such a fit of anxiety that it took over his whole mental, emotional and physical state.

Autism is just so complex and layered. It allows Nico to see, hear, and know things that only a select few have the privilege of experiencing, but it can also be so crippling and stifling.

Even after 8 years of navigating these waters with Nico, I feel like I have so much further to go and grow with him. We’re way past the starting line, but have no idea of the finish line, which for me is having Nico become self-sufficient and self-reliant. Until I can figure out a way to live forever, that’s the end goal, but I am just not sure how long our journey will be to get him there.

On days like this though, it does feel far away, but I have to believe that he is learning his emotions and how to manage them. I don’t think he would’ve been able to express to me his feelings of relief if he didn’t understand what anxiety felt like to hold him in it’s grip and then let him go.

And because he is such a pleaser, all he cared about for the rest of the afternoon was letting me know that he “had a wonderful time” even though I know he didn’t. He continually shared that with me throughout the day so that I wouldn’t feel like the lunch was a bust. I know he was sensing my unrest and he didn’t want me to be unhappy.

My Nico knows me so well. He knows when I’m genuinely happy and feeling at ease and when I’m faking it to make it through something.

I liken us to E.T. and Elliott. He’s the peanut butter to my jelly.

One thing I always want to make sure people know about children and adults with autism is that they are tremendously empathetic and affectionate. They feel things very deeply. And although autism may present itself in ways that demonstrate disinterest or apathy, do not be fooled…autistic individuals see you, hear you, and feel you more than you will ever realize.

The day may not have been one of our best, but Nico did come out the winner. He took my hand and connected with me. Maybe that is what truly is moving us along and over this plateau. I have to believe it is. Connection is everything and Nico and I have an indelible one.

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